Kathryn J. Bryan, Ph.D., Skylight Financial Group

What is the ABLE ACT?
The Achieving a Better Life Experience Act of 2014 (the ABLE Act) was signed into law as part of the December 2014 Tax extender package, which allows states to create a qualified ABLE program. Ohio has since passed and implemented the ability for individuals to sign up for an ABLE account utilizing the STABLE accounts (www.stableaccounts.com). The ABLE Act allows accounts to be established for qualifying individuals that can supplement their Medicaid and Social Security income (SSI) benefits without disqualifying them from receiving benefits.

Who can sign up for the ABLE account?
Individual’s who are eligible for social security disability (SSDI) or SSI and/or have a disability certification filed by the parent or guardian that states that the individual has a medically determinable physical or mental impairment that results in marked and severe functional limitations. The disability or blindness must have occurred before the individual attains age 26.

How is the ABLE account taxed?
If the ABLE account distributions do not exceed the disability expenses, none of the distribution is includible in income. If the distributions do exceed the designated beneficiary’s qualified disability expenses, only a portion of the distribution is not taxable.

How do distributions from the ABLE account impact SSI and Medicaid that the individual will receive or is already receiving?
ABLE account balances, contributions, and distributions for qualified disability expenses are not considered in determining eligibility for means-tested federal benefit programs or the amount of the benefits under the programs, therefore the individual will not lose SSI benefits due to funds that are held in this account. There are two exceptions where ABLE act funds can impact SSI benefits. First, distributions from the ABLE account for housing expenses are considered income in determining eligibility for SSI and/or if the ABLE account balance exceeds $100,000 the excess is considered a resource of the designated beneficiary and will suspend the SSI benefits until the balance decreases below the $100,000. This however would not impact Medicaid eligibility. Total contributions from all contributions for the ABLE account per individual are limited to the gift tax annual exclusion ($14,000 for 2016). 

How will this help my family?
The ABLE accounts allow family members and individuals to contribute to an account that can provide funds needed for qualified disability expenses such as education, housing, transportation, employment training, health, personal services, financial services, without disqualifying them from SSI, SSDI, or Medicaid.  This is not to take place of special needs trust if one is needed for the family but can help complement the Special needs trust and help the individual have more flexibility with their finances.

The information provided is not written or intended as specific tax or legal advice. We are not authorized to give tax or legal advice. Individuals are encouraged to seek advice from their own tax or legal counsel.

CRN201809-205335

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Open enrollment for Affordable Care Act compliant health insurance plan (commonly known as Obamacare) is right around the corner, running from November 1, 2016 to January 31, 2017. If you wonder whether switching your child over to an ACA-compliant health plan may lower the overall cost of your health insurance and/or help your child get the services he or she needs, now is the time to begin looking into the options.

To research how ACA plans work, visit https://www.healthinsurance.org/.  Through the site, you can even obtain free health insurance quotes: https://www.healthinsurance.org/quotes/ or receive free help from licensed agents by calling 1-844-608-2739.

CFK Parent Jen Wish switched her son to an Affordable Care Act (ACA) compliant health insurance plan in January 2015.  Here is a Q&A about her experience:
 
Q:  Why did you switch plans?
We switched my son to an individual ACA plan because we were frustrated that my employer plan didn't cover most of the services he needs.  My Aetna employer plan, which is great for the rest of my family's coverage, didn't cover speech therapy, occupational therapy (OT) or Applied Behavior Analysis (ABA). For my employer plan we pay approx $300/month and have a very low deductible, but I was also paying about $250 extra per month out of pocket just for speech visits one time per week. This led me to look into other plans because my son needed more services and I couldn't afford to pay for speech, OT and ABA all out of pocket. 
 
Q: How did you find a plan?
I did a lot of research on my own including looking on Healthcare.gov. I also worked with a broker who answered my many questions about coverage options.
 
Q: How did the ACA insurance plan compare in cost to your employer covered health insurance?
On the ACA individual plan we pay $185/month (this includes medical and dental) and there is a $4000 deductible ($4000 sounds like a high deductible, but we were already paying $3000 out of pocket per year just for speech once per week).  I feel like this is a great deal considering in 2015, the first year we switched to the ACA plan, we racked up approximately $40,000 in claims and only had to pay the premium plus deductible.
 
The ACA plan he is currently on covers 40 speech visits (it covers 20 regular speech visits and an additional 20 "autism visits" because of his diagnosis), 40 OT/PT visits and 20 hours per week of ABA therapy. So he went from only having speech (at $55/week out of pocket) to having speech, OT and ABA.  We started ABA in home in the spring/summer of 2015 about 7-10 hours per week, and now our ABA Therapist goes to school with him in the afternoons to run his behavior plan, support his teachers and to work on socialization with his classmates.
 
The plan we chose is also a Health Savings Account Plan (HSA).  We didn't actually realize what this meant at first.  By the time I figured it out in late February of this year, we had already reached our deductible.  The Health Savings Account is definitely something we will definitely take advantage of for 2017.
 
Q: What would you tell others who may be looking to switch but are hesitant?
Do your research and talk to a broker now!  For us, it really was the best decision we could have made. I attribute much of the growth we've seen in our son over the past year and a half to the amount of therapy and support we've been able to provide for him in addition to what the school provides. Over the past year, I've chatted with a bunch of CFK families and families from other organizations I'm involved in who are looking to do the same thing. I remember how nervous I was when I first took him off my employer coverage and signed him up for an individual plan. I felt like somehow it wouldn't work out or it wouldn't cover what they said it would, but thankfully I was wrong! 

By Carole Richards, President, Executive Director and Founder, North Coast Education Services

Often parents purchase workbooks to reinforce their child’s learning experiences.  While I applaud any effort by parents to help their child, maybe there is another way.

My three-year-old granddaughter has endless skills to master.  My wise daughter takes any opportunity to make her playtime a learning experience.  This summer, try and think “outside the school box” and make learning fun.

Math

Money skills:  Most kids love to play with money.  Use pennies, nickels, dimes or dollars for counting and money sense.  Teach your child to count by ones, fives or tens using coins.  Help your child count the money for a fun trip to purchase something of their choice. 

I send my granddaughter two, one-dollar bills every holiday.  She saves them and shops for what she wants.  The last time she selected a less expensive backpack because she realized she could get three things instead of two with this decision.

Time skills:  If your child is always asking how long until.  Using the timer on your phone;  Set it for “five minutes until”.  Once the five minutes time period is mastered, increase to ten then fifteen minutes.  My children could wait two hours when they were quite young. They had conceptualized “how long”.

Math facts:  Play a train game on the floor.  Lay the fact cards out and your child picks up cards answered correctly.  Or, they stand “x” feet away from you. Each time he or she answers correctly; take one step forward.  Wrong answers, move back one.  Make wrong answers ok saying “whoops” or “hurray, mistakes are ok."

I had a math fact club after school for kids struggling fourth graders.  They played the “x” feet away game.  It was fun, their classmates wanted to stay and play.

Fractions:  Conceptualize fractions with measuring cups.  Bake a favorite recipe.  You hold the “one-cup” measuring cup; your child adds four “¼ cups” into your cup.  Change it up to halves or thirds. 

The “Pizza Pie Game” is a great way to understand fractions (Yes, it is a real game.)  You can do the same with a real pizza.  Make it more fun by letting them make their own pizza and “count the pieces to the whole."  Cut it in fourths, thirds and fifths.

Reading

Read to your child:  Parents often think the child must now do all the reading in 1st grade.  If reading is difficult the child begins to hate reading.  Select books that are above their reading level.  Why not read a chapter book?  My favorite children’s author is Beverly Cleary.  She just turned 100 but her books are still relevant.  Her Ramona character is always in trouble for one of her creative adventures.  She is so funny, your child may not want you to quit reading.

Let your child pace in front of you if he or she can’t sit still.  Ask simple questions, “Where is the character in the story?”  “When do you think the story took place?”  “How did the character feel?”  Select just one question a reading so it doesn’t feel like school.  Make your question and its answer a discussion.

Make-up funny stories:  While you are in the car or cooking, make-up a funny story.  Make your child the main character; let the child give the story an ending. 

Rhyming, Language and Vocabulary:  Read nursery rhymes to your child.  One teacher used fairy tales in her middle school classrooms.  She was the “roving reporter” and asked her class, “Why did the stepmother leave Hansel and Gretel in the woods?”  Was it because she was protecting them, hated them, or some other cause?   

Use music:  John Denver songs like “Rocky Mountain High,” teach similes and metaphors.

Choral Reading: My group of remedial eighth graders taped “The Night Before Christmas” with sound effects.  Yes, it was remedial reading but still fun.

I can’t begin to share the endless possibilities that make learning fun and productive.  Your child needs specific skills.  Think of real-life experiences you can use to help make learning fun this summer.  Throw away those workbooks, the kids have seen plenty of them.  Discover new and  fun learning experiences. Happy learning!

Virtual Reality: Friend or Foe?

by Joe Little

Five Horizons Foundation

You may be thinking that an article about virtual reality is a little premature, but 2016 is the year of the headset!  Developers like Facebook’s Oculus Rift, HTC, and Playstation are all getting into the virtual reality game and the initial results are pretty good.  My question to our community is; how will it impact our special needs kiddos, especially those on the spectrum?  If your son is anything like mine, he can get lost in his iPad for hours on end if I don’t reign him in.  What if he had access to a literal “different world?”  I downloaded Minecraft the other day and tested it out myself with my Samsung phone and goggles.  20 minutes went by in the blink of an eye and I don’t even enjoy that game!

This article is not a position statement, rather a conversation starter.  I’m curious about the opinions of other parents on this technology.  I can also see a huge upside.  Imagine your child being able to wear glasses that show them visual representations of what’s being said to them!  You speak the words, “juice or milk?” and they see images of each with the word “or” in the middle.  No more icons all over the fridge!  We are just scratching the surface of what’s possible here but rest assured, it’s coming.

If you would you like to be featured in an upcoming column, please fill out the online form.

Carla is the mom of a son.

Do you work outside the home? If so, what do you do?
I am an RN and in management. My specialty areas are Labor and Delivery, Critical Care and Sexual Assault Nurse Examiner (SANE).

What do you do to relax?
During my quiet times I love to doodle, draw, paint and read books. I also enjoy spending time with family and riding my motorcycle. Out on the road with the wind in my face I can make almost any problem go away, just for a little while.

What else would you like to tell us about yourself?
My son is my everything! Yes, he has an autism spectrum disorder (ASD), but he is loving, caring, sweet, playful and I wouldn't change him for anything in the world. He is perfect.

What benefits has Connecting for Kids brought to you and your family?
Kinship and friendship is the foundation of what Connecting for Kids has provided for me. They have also provided resources and advice along with much needed education. Connecting for Kids means I'm not alone!

Which have been your favorite Connecting for Kids resources?
My favorite resource provided by Connecting for Kids has been reaching out for help and someone always being there!

What I worry about most…
As a parent of a child with autism what I worry about most is my son’s future. Being so uncertain about what and how I teach him and how those things will impact the rest of his life. I want the best for him. I worry about whether or not he will be able to take care of himself in adulthood and I worry about my own health and how long I will be here for him.

The hardest thing for me to learn was...
The hardest thing for me to learn was my child does not have a disease. Autism is a learning disability, social anxiety disorder, a sensory processing disorder, and inability to communicate among many other things but my child is not dying.

The worst thing about parenting a child who struggles is...
The worst thing about parenting a child who struggles is not knowing if what I am doing is the best or enough. All the guidance in the world and there are still no solid answers.

We'd love to know if you have any go-to resources such as blogs, websites, or books that we can share with other parents.
I am part of the Connecting for Kids Facebook Chat Group and that seems to be my number one resource. I get advice from educated, experienced people and most importantly meet other parents like myself.

Is there anything else about your journey that you would like to share with other parents?
I have learned that every parent and child's experience with autism is individual and unique. Some may think I'm crazy but I wouldn't change it for anything in the world. I love my son just the way he is.

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If you would you like to be featured in an upcoming column, please fill out the online form.

Lisa is the mom of three children.

Do you work outside the home?
I am a first grade teacher.   

What do you do to relax?

Not much.  I need to get better at this one.

What else would you like to tell us about yourself?
Even with all its challenges…there isn't really much I would change about my life.

What benefits has Connecting for Kids brought to you and your family?
It has been a pleasure and an honor to watch this amazing organization grow from the ground up.  It has truly filled a void in our community.

Which have been your favorite Connecting for Kids resources?

I do enjoy the speakers, the Meet and Greet in the spring and the annual fundraiser. 

If I could go back in time and talk to myself the day we got the diagnosis I would say...

I KNEW IT!!!!  I told you to trust yourself!  Even when the doctors said, “give it time.”  I'm glad you trusted your instincts and got the evaluations and eventually the diagnosis necessary to open doors for your family.

Everything is going to be OK.  I know right now it may not seem so, but have faith that it's all going to be exactly the way it’s supposed to be.  I know this isn't the road you expected to travel, but there will be some awesome surprises along the way.  These surprises will come in every size, shape, and color you can imagine, but when they appear…rely on them and trust that they have your child's best interest at heart.  They will eventually become a very important part of your life and you won't be able to remember how you ever survived without them.

Live in the moment.  Try not to let worrying about the future take away from the joys you have right now.  There are so many amazing things that come with parenting a child with special needs.  Someday you will look back and say, “I wouldn't change one thing.”                                                                        

What I worry about the most...
…is that I won't always be there to take care of my child (morbid thought, right?)  Has my husband been paying attention to all the little details…what goes in his lunch box?  How he likes his banana cut? What time he starts his homework?  How to best calm him down when he's upset?  Will he remember to tickle him before bed?

Will he advocate for him?  Will he attend the IEP meetings?  Will he remember to be the calming presence when the kids lose their minds? 

Have I done a good job preparing him to do these things?  Have I done a good job preparing my children to be independent and advocate for themselves?  Will they all be OK without me?  Will I be OK without them? 

I've really got to stop worrying about this :-)

My greatest lesson learned...    
People usually don't understand what it’s like to have a child with special needs unless they have one themselves…and that's OK.

We'd love to know if you have any go-to resources such as blogs, websites, or books that we can share with other parents. 
I've read so many books that I've lost count.  But that is usually where I start looking for help.  I go to Amazon Smile (and select CFK as my charity) and just type in what I'm looking for.  I usually like the true, honest narratives better than the text books.  And, of course, if you're on the CFK website you're already in the right place to find the help you need!

Is there anything else about your journey that you would like to share with other parents?
I've probably been where you are right now.  I've had the same fears, worries, anxieties, questions, concerns and hopeless feelings.  I get it…many of us do.  You are not alone and there are many parents that would love to be your sounding board and your shoulder when you need to cry. Becoming friends with other parents of kids with special needs was, by far, the best thing I ever did for myself and my family.  They have been an invaluable resource and I can't imagine my life without them.  It does get easier and everything is going to be OK.          
 

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Q: Why Would I Want My Child to Participate in a Research Trial?

A: Dr. Nora McNamara, University Hospitals Case Medical Center, Child & Adolescent Psychiatry Principal Investigator of Research

The United States Food and Drug Administration (FDA) has established a continuum of events necessary for approval of any new medical treatment or device that begins with animal studies, moves to small Phase I studies with healthy adult volunteers, and if the investigational treatment is deemed safe, continues with Phase II studies in affected individuals, and then Phase III studies that compare the treatment under study to either a placebo (something that looks like the investigational treatment but is inactive) or to an already established/FDA indicated treatment. This process takes years, yet it is essential as the best and safest way to determine if new treatments are helpful for many childhood conditions. I have been the Principal Investigator at the Discovery and Wellness Center for Children (DWCC), the University Hospitals Case Medical Center’s child and adolescent psychiatry research group, since 2012. Since that time, the DWCC has participated in Phase II and Phase III trials for new medications for children and adolescents with depression, bipolar spectrum disorders, schizophrenia, ADHD, Tourette’s Syndrome,  anxiety disorders, and Autism Spectrum Disorder. More than half of the medications tested were not approved by the FDA, because there was no observed or recorded improvement in the group of children who received the medication compared to the group of children treated with a placebo.

So why, knowing this, would anybody ever want to enroll a child or adolescent in a clinical trial of a proposed new treatment? There is actually only one legitimate reason for anybody to volunteer to put themselves or their child at risk (risk of getting a placebo, risk of having potential side effects from the study medication, risk of having one’s blood drawn repeatedly, risk of boredom from long visits at our center answering repetitive/dry questions, among many other risks). That only legitimate reason is ALTRUISM. The youngsters that volunteer to be in clinical trials almost 100% of the time do so because they want to help other children in the future, children they will never even meet. That is a particular behavior that only the most caring human beings ever get a chance to practice. At the DWCC, we have dozens of children and adolescents and young adults every week who freely give us their assent to participate in a long and potentially uncomfortable process that may not even help them as individuals feel any better, because they want to help out their fellow human beings!

Every day, we DWCC researchers are awed by the bravery, the honesty, and the determination of our young subjects. We are grateful to have the opportunity to get to know them and to work with their families, we are constantly amazed by their determination to do something so meaningful at such young ages, and we are forever in their debt for those just-a-hair-less-than 50% trials that find that the treatment was effective and safe, and lead to new FDA approved treatments for so many conditions. The next time you or your child take a medication that has been FDA approved for whatever you hope the medication will help with, you might like to say a silent “Thank you!” inside your head to all of the hundreds of the unknown, brave volunteers who tried that medication (or a placebo!) in those Phase I, II, and III studies years before your medicine was available for regular clinicians to prescribe, because those unknown heroes, they did it just for you!

Paula C. Papp
MA Ed from Baldwin Wallace College in Reading Instruction
Early Intervention Specialist

It's more complicated than you think!

There are lots of rules that dictate how our spoken language gets put down on paper.  Helping your child become familiar with these "conventions of print" will support their reading and writing development.

Here are some suggestions for a younger or a less experienced child:
•    Let your child get the book "ready to read."  Hand over the book upside down or backwards and see if your child can turn it the right way. 
•    You can be soooo silly!  Start reading a familiar book from the back to the front, or maybe start in the middle. 
•    Touch each page as you go along.  Children usually enjoy turning pages.  We read the left page, then the right page, then we turn the page. 
•    Point out the pictures and the words.  On the page of a picture book, the words tell us about the picture--and the picture tells us about the words.  We read the words, and we look at the pictures. 

As your child becomes more experienced:
•    Track the print with your finger as you read.  Your child will become familiar with starting at the top of the page, moving along the line from left to right etc.
•    Provide "left to right" experiences throughout the day.  How many toy cars do we have?  Line them up and count from left to right.  When setting the table for dinner--put the napkin down, then the fork, then the plate, then the spoon or knife. 
•    Place magnetic letters and numbers on the refrigerator.  Help your child sort the letters from the numbers.  Can you find all the letters that have a hole in them?
•    Find a favorite or repeating line of a book or song.  On small pieces of paper or note cards write (with your child watching of course) one word on each piece of paper.  Now line them up and point to each one as you read them.  How about mixing them up and lining them up again?  Be sure to leave a space between each word!
•    Point out punctuation.  You can find periods and question marks in your child's books, or in other books, newspapers, magazines, online stories around the house.  Children will experience what these marks mean as you read with them. 

Happy reading, Paula

Q: My child is having some attention issues in the classroom, how can I tell if this could be related to vision?

A: Alex Andrich, OD, FCOVD, The Vision Development Team

Inattention, distractibility and problems focusing on schoolwork have become significant challenges for parents, teachers and students.  Underdeveloped vision skills are often at the root of attention issues.  There are over 23 vision skills needed for success in the classroom.  Children who have deficits in these fundamental skills have trouble with concentration, focusing, and comprehension.  Undetected vision problems like Convergence Insufficiency, inefficient eye movements, and deficiencies in eye teaming cause fatigue, frustration and confusion.  Sometimes children report that they don’t feel well or have headaches.  Often children with vision skill deficits have low self-esteem and anxiety related to school.

80% of learning in the classroom comes through the visual system.  Children with eye teaming problems or visual processing problems can be highly distractible, finding it difficult to concentrate and remain on task when the strain on their eyes is so great.  In fact, many of these children are often misdiagnosed with Attention Deficit Disorders, Learning Disabilities, or Dyslexia.

The American Optometric Association (AOA) estimates that 1 out of 4 children have a vision problem that interferes with learning.  Children don’t always know they have a vision skill deficit.  The AOA states that all school aged children should have a comprehensive eye exam with an eye doctor once a year.  While vision screenings with the school nurse or pediatrician are important, they are not a substitute for a comprehensive eye exam with an eye doctor.

Children with academic challenges should have a specialized Sensorimotor Vision Examination to uncover hidden vision skill deficits.  A developmental optometrist goes beyond checking for 20/20 eyesight and will evaluate visual skills needed for optimal functioning in life.  The doctor may prescribe stress reducing glasses or an individualized program of Vision Therapy to help develop eye muscle coordination, depth perception, and visual processing skills necessary for success in school.

Click on the following for a Symptom Checklist Survey.

For further information, please visit our website:
www.sensoryfocus.com

Name: Laura has three children.

Do you work outside the home?

I work part time for my sister-in-law's business, Artists Uncork'd.  Artists Uncork'd is a company that teaches people to paint while in a social setting. I am a background person who helps run the events smoothly.  I also help organize the art studio.

What do you do to relax?
Read, watch TV and exercise.  I try to swim half of a mile once or twice a week.
What else would you like to tell us about yourself?     I am mostly a stay-at-home mom. I only work about 5 hours a week. My children are ages 5, 8 & 9. My husband and I have been married for almost 11 years. 

What benefits has Connecting for Kids brought to you and your family?
The biggest benefit is that they directed us to a Bible Study at Christ Evangelical Lutheran Church. The friendships we have formed at this bible study have been priceless. We are so thankful for that. 

What I worry about the most...
I worry the most about my son making friends. It would make me so happy if he could have play dates the way my other children do.  He is in a social group through ABA Outreach Services.  I know the skills he is learning there will help him now and in the future.

The area where I have grown the most...
I have learned to better handle my emotions. Before I use to worry and get upset about the tiniest detail. I think because I have had so much stuff thrown on my plate I have learned to not let the little things bother me so much.

I get embarrassed when...
I get embarrassed when my son (who is on the autism spectrum) throws a tantrum when we are out in public. I can just feel all the strangers staring at me and judging my parenting. It makes me frustrated because I feel like I am being scrutinized even though no else knows the circumstances of my family.

We'd love to know if you have any go-to resources such as blogs, websites, or books that we can share with other parents. 
I really liked the Book: "What Color is Monday?" by Carrie Cariello. It explains how a normal family deals with autism. I also love the Book, "Wonder." by R. J. Palacio. I think it should be in every house with a special needs individual. It is great book about accepting everyone just how they are.

Is there anything else about your journey that you would like to share with other parents?
Just to remind them that they are not alone. I know how lonely it can feel at times.  Just to remember that there is always someone who can relate to what they are going through.

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