Confused about Health Care Reform?

Hello, Utah Kids families!  My name is Brandee Garvoille, I have a son that’s almost 15, and a daughter, 10 years-old; both are on the Autism Spectrum, have other learning disabilities, and severe ADHD, so things can be a little crazy at our house!  Not to mention, I also work full-time!  I began my career in the insurance industry by working on the carrier side.  I worked with IHC Health Plans (which later became SelectHealth) for almost 6 years.  The Insurance Exchange recognized my talent, and hired me to start working with them in 2005.  I have an extensive understanding of all aspects of placing and servicing insurance policies that I learned while working on the carrier side.  In 2007, I obtained my insurance license, which allowed me to expand my roll with The Insurance Exchange even more.  I love my job!  As crazy as it sounds, I’m passionate about insurance!  However, I know how extremely frustrating it is; the denials, the benefits, the customer service, and to now throw “Obamacare” in to the mix.  I love when I can answer questions, and help people with their insurance needs!

On November 15^th the second Open Enrollment for individual healthcare through the Federally Funded Marketplace, or directly with the carrier of your choice, begins.  For most of us, there are still a lot of questions, and some confusion, in regards to HealthCare Reform, aka Obamacare, aka PPACA, aka ACA.  In this post, I’ll do my best, to break it down and explain it in laymen’s terms.

The biggest thing that came about with the implementation of the Affordable Care Act, that especially affects our special needs kids, is that everyone is now guarantee issue.  You cannot be denied or rated up on an individual policy for health conditions.  Waiting Periods and Exclusions for Pre-Existing Conditions have also been eliminated.   This was huge for our kids! 

One of the biggest confusions has been when an individual can apply for coverage; you are no longer able to apply for an individual policy whenever you want.  Open Enrollment is November 15, 2014 through February 15, 2015.  Outside of Open Enrollment, you are only able to enroll in a plan if you qualify for a Special Enrollment Period.  A few examples of qualifying life events include:

·         Marriage or divorce

·         Having a baby, adopting a child, or placing a child for adoption or foster care

·         Moving your residence, gaining citizenship, leaving incarceration

·         Losing other health coverage due to losing job-based coverage, COBRA expiration, aging off a parent’s plan, losing eligible for Medicaid or CHIP, and similar circumstances.

An important thing to remember is that voluntarily ending coverage doesn’t qualify your for a Special Enrollment Period.

In order to make health insurance more affordable to you and your family, it is possible to have help from the Federal Government in paying your premiums.  This assistance is called Advanced Premium Tax Credits aka Subsidies.  In order to obtain a subsidy, you must apply through the Federal Marketplace, several carriers (Altius, Humana, SelectHealth), allow you to go through their website, as it is connected to healthcare.gov, to see if you qualify for a subsidy.  These subsidies are generally available for the following people:

·         Individuals who are not offered insurance through their work

·         Those who are not eligible for a public plan like Medicare, Medicaid, or CHIP

·         Those with annual income between 100 and 400 percent of the Federal Poverty Level.

These subsides are based on certain criteria such as family size, age, and income.  To qualify for a subsidy, you must:

·         Be a citizen or legal resident of the U.S.

·         Have a family income between 100 to 400 percent of the Federal Poverty Level based on Modified Gross Income.

·         Not have access to a qualified employer-sponsored health plan that provides minimum value (actuarial value of at least 60 percent) and that is affordable (does not cost you more than 9.5 percent of your income)

·         Not eligible for public coverage-including Medicaid, CHIP, Medicare, or military coverage

·         Use your subsidy to purchase insurance.

Many of you may be on a “grandfathered” or “grandmothered” plan; this is part of ACA that says you can keep your current coverage without changing.  Many employers, and some individuals, have chosen to remain on their old plan, and not change to a plan that complies with ACA.  However, if you ever want to change this plan in any way, i.e., your deducible, co-pays, or co-insurance, etc., you would have to move to a new plan.

There is a tremendous amount of information that is available, a tremendous amount of regulation, and requirements in regards to PPACA.  The information above is only meant to be a summary of the more pressing issues dealt with on a daily basis.  The good news is you never have to try and navigate this alone!  Please don’t hesitate to contact me, Brandee Garvoille, with questions on your specific situation.  My office number is (801) 262-2691, or email me at brandee@ieutah.com.  

How to Deal with Burnout

This article is not directly related to special needs but the information is just as important.  This is reposted with permission.

Anil was beyond exhausted.  He had taken on a new job because it promised greater prestige and more income.  But now that he was working late nights as well as weekends, sometimes up to 80 hours a week.  “The work environment was chaotic,” he states, “and all the responsibility fell on me.  I said to myself: ‘What have I done?  If I don’t make a change, I’m dead.’  Anil was rapidly burning out.

Workplace burnout is more than the mere tiredness, and it goes beyond the ordinary stress of everyday work.  Burnout is characterized by chronic exhaustion and strong feelings of frustration and powerlessness.  Those suffering from burnout tend to withdraw emotionally from their work, lose motivation, and become less productive.  Studies also link burnout to numerous emotional and physical health problems.

What causes burnout?  Work overload is often a factor.  Because of economic pressures, some employers demand that employees work longer hours, at times for less money.  Technology now keeps some in constant contact with their job, blurring the lines between work and private life.  For some, job insecurity, lack of control over their work or feelings of being treated unfairly contribute to burnout.  So does dealing with unclear priorities or conflicts with coworkers.

Burnout can also be self-inflicted.  In the pursuit of career goals and greater income, some try to fit ever more work into their life.  Such ones may become over-committed and find themselves on the road to burnout.

If you are experiencing workplace burnout, how can you recover?  Granted, change may seem impossible if you feel trapped in circumstances beyond your control.  Nevertheless, consider the following four steps for dealing with burnout.  You may have more options than you realize.

Ø  Evaluate Your Priorities

What is most important to you?  Many people would likely put family relationships and good health near the top of their list.  These are things that are likely to suffer if you are burned out.

By clarifying your priorities, you prepare yourself to make difficult decisions and accept trade-offs.  For example you may see that your work is leading to burnout.  Yet you my reason, ‘I cannot change jobs or work less; I need the income!’ True, everyone needs income, but how much and at what cost to the things you value most?

Beware of pressure to adopt the priorities and yours are likely different.  Others may choose to put work first in their life, but this does not mean that you must do the same.

Ø  Simplify your Life

To reduce stress and gain time for what you truly value, you may consider working fewer hours, you may be able to persuade your employer to reduce your current job demands, or you may determine you need to change jobs.  Whatever you decide to do, you will likely need to adjust your financial situation and make changes in your lifestyle.  But this is not impossible and may not be as hard ass you might think.

In many lands a consumer-oriented society sends the message that happiness is linked to income level and possessions.  But in reality, it is not.  A simpler lifestyle can bring greater freedom and satisfaction.  To prepare for such a change, reduce expenses and save money.  Try to lower or eliminate debt.  Discuss the need for change with your family members, and seek their support.

Ø  Learn when to say No to Work

If you face an unrealistic workload or some other persistent problem in your workplace, discuss your situation with your employer.  Reassure your employer of your commitment to your work and explain what you are willing to do, but be clear and firm about what you are not able to do.

Use foresight and be realistic.  If you want to work less, your employer may expect you to accept less compensation.  Anticipate risks such as the threat of job loss, and be prepared to respond.  Remember that your prospects for finding a different job are better while you are still employed.

Even when you have reached a mutually agreeable work arrangement with your employer you can expect to be pressured again to take on more work.  What can help you remain firm?  Keeping to the commitments that you have made.  Doing so might give you leverage to ask your employer to do the same in return, including keeping your workload within the agreed limits.

Ø  Renew Yourself

Even when your work is free of major problems, you may still have your share of stresses, difficult people and unpleasant situations.  So make time for sufficient rest and balanced recreation.  Remember that recreations does not have to be expensive so be refreshing to you and your family.

Cultivate interests and friendships apart from your work, and avoid defining yourself by the type and amount of work that you do.  Why?  The book Your Money or Your Life observes: “who you are is far greater than what you do for money.”  If your identity and self worth come primarily from your work, then you will find it difficult to minimize the rule that work plays in your life.

Meet our October Kid of the Month

Meet Whitney, a happy 7 year old with bright blue eyes and red hair.  Whitney has a smile that will light up a room.  She uses it as her main form of communication.  Whitney is in first grade and LOVES school.  She is very social and prefers to be around other kids.  She has two older brothers who take good care of her and love her deeply.

Whitney has been diagnosed with Cerebral Palsy.  She suffered an anoxic brain injury at birth due to complications from her mother having an Amniotic Fluid Embolism.  Both Whitney and her mother were lucky to survive!  Whitney has spastic quad CP.  She has a baclofen pump for spasticity, is 100% G-Tube fed,  wheelchair bound, uses a stander, DAFO's, and scoliosis brace.

Whitney loves to watch Mickey Mouse Clubhouse, Doc McStuffins, and Sofia the First.  She also loves Tinkerbell movies.  She loves to watch the leaves blowing in the breeze and having other kids play with and around her.  She is a very brave girl and rarely complains.  She loves to snuggle and be held.  She spreads joy wherever she goes.  

Taking Joy in the Little Things

Hello to our Utah Kids Family!  We love reading about and sharing in your triumphs and your hardships.  It’s nice to know we are not on this journey alone.  We have each other.

I would like to introduce our little family and tell you a bit about our 10 month old son, Jonathan or Jonny for short, and his diagnosis.  I am Molly and my husband Dave and I have been married 18 years.  We did not think we would be able to have children, but in April of 2013 we found out we had a little one on the way.  We were surprised and excited and all of those wonderful emotions that you have when you find out that you are going to be able to have the child you had given up on being able to have.  We also knew that there was a 1 in 4 chance that our baby would have Lowe Syndrome.  I had an amniocentesis done when I was 5 months along and we found out that our little boy had Lowe Syndrome.

Lowe Syndrome is a sex linked recessive genetic condition that women carry and males are affected by.  I am a carrier and I grew up with 3 brothers, 2 of whom had Lowe Syndrome.  Lowe Syndrome is a rare syndrome that affects the eyes, kidneys and brain.  Boys are born with cataracts, which is a cloudiness on the lens of their eyes, and often have Glaucoma, which is an increased pressure inside the eye.  Their kidneys do not function properly which makes it hard for them to put on weight and keep the nutrients that they need to grow and have their bodies function properly.  These boys also have varying degrees of mental and physical handicaps, anywhere from moderate to very severe. 

Jonny is our little miracle baby.  He inspires us daily with his accomplishments and his fun smile.  He spreads love and joy wherever he goes. 

He was born in November of 2013 and he spent his first ten days in the NICU because of breathing and eating issues.  In his first 6 months of life he had 5 surgeries and 8 other exams under anesthesia to take care of the glaucoma issues and cataracts on his eyes.  He is a trooper and did so well with all of these procedures.  He can see well with his glasses now.  We hope to have artificial lenses implanted in his eyes about the time he turns 3.

Jonny is delayed physically and has low muscle tone.  We are working on his head control and sitting up right now.  We hope that he will be able to sit up on his own by the time he is a year old.  He likes to roll around, kick and play with his musical mobile.   We have not noticed any significant mental delays at this time.  He loves to babble, play and listen to upbeat music.  He also enjoys finger play like pat-a-cake and itsy bitsy spider. 

He is a Mama’s boy and will call “Mom mom mom” if I get out of his sight or hearing.  He loves to play with Dad as well and he calls Dad “A” like the a in apple.  He is also starting to say “Hi” when someone says it to him. 

We work with several specialists with “Kids on the Move” which is the Early Intervention program in our area.  They help us with Jonny’s learning and growth. 

We treasure every step forward that Jonny makes.   Every smile is a treasure and he is our sunshine.  This journey that we started when Jonny was born has been hard at times but overall we have had a very positive experience.  We have had to adjust our perspective on what we expect but that has allowed us to enjoy our little boy even more.  We see the world through different eyes and we try not to take anything for granted.  The love and support we have received has been wonderful.  We couldn’t imagine life without our Jonny.

For more information on Lowe Syndrome you are welcome to visit the Lowe Syndrome Association website at http://www.lowesyndrome.org/.

~~ Molly Barrington

Ten things I would do differently if I could parent my son with Autism over again

10 Things I’d do differently if I could parent my son with Autism over again.

By Heidi Michelsen Whittaker.

1. I WOULD SLOW DOWN!! I would make my life as easy as possible by cutting out all the non-essentials and focus on the most important things instead. I wouldn't even try to keep up with the neighbors or other family members with “typical” children. I wouldn't make my son with Autism try and run the race at the normal pace, rather I’d do a better job at stepping back and letting him decide if he even wanted to put on his running shoes. I wouldn't feel guilty about not going somewhere or coming home early if my son was on sensory overload. I would accept a slower pace and not look with longing out the window at those who “seemingly” lead more exciting, more eventful lives. I’d make peace with the slower pace and find joy in it.

2. I WOULD TAKE CARE OF ME BETTER. I would first have allowed myself to grieve—to mourn the loss of a “typical” child without guilt (even if someone ELSE did NOT mourn the same way), and then I would take A LOT more breaks all along the way—hire babysitters and get away even if it was expensive. I would NOT allow guilt to ever creep in whenever I took care of me. I would have rewarded myself more often—even if it was just for little things I did right, instead of berating myself for all the things I did wrong. I’d recognize when I was feeling overwhelmed and I would STOP, allow myself a good cry, do something to take care of me, and then go forward again feeling renewed instead of continually exhausted.

3. I WOULD BECOME THE MASTER AT HANDLING BAD ADVICE OR HURTFUL COMMENTS. I would have dealt with disapproving family members or ward members or neighbors more with my “head” than my “heart.” I’d worry less about what everyone else said I was doing “wrong” as a parent. I’d reply to unwanted advice by saying, “I can tell you’re trying to help, and I appreciate that. We’re working on some different therapies that seem to be really helping, but your concern is appreciated.” Or, “I’m not sure if you’re trying to help when you say that, and maybe I don’t truly understand what you mean by that statement, but I’m going to give you the benefit of the doubt.” And then I’d forget about their comments as quickly as possible for MY health instead of holding on to the hurt and anguish. I would quit trying to get everyone around me to understand MY life and MY journey with Autism, rather, I’d spend more time trying to understand my son’s life and HIS journey with Autism.

4. I WOULD HAVE EMBRACED MEDICINES INSTEAD OF FEARING THEM. I fought a long and hard unnecessary fight against my children taking medicines because of MY own worries and fears. When I finally bit the bullet and gave my children medicines, suddenly my children THRIVED and had success in all areas of their lives. I would have looked at medicines like a parent who gives Insulin to her child with Diabetes. I would better understand that if my children NEEDED medicines for their greatest success, then depriving them of those because of MY fears was wrong.

5. I WOULD CELEBRATE THE SMALL STUFF DAILY. I would treat the small successes in my child’s progress as if they were big ones. I’d take my son out to ice cream more or hug more often when he reached a milestone, no matter how small. I’d praise more and get upset less.

6. I WOULD HAVE RELIED, TURNED TO AND TRUSTED GOD MORE. Instead of feeling “punished” or angry for a life plan that wasn't MY choice, I would have had more faith that there WAS a purpose to my difficult life. I would have trusted in God more and complained A LOT less. I would try to have more gratitude. I would remember that I go to Church to have a relationship with GOD, NOT to have a social life. I would remember that none of us is perfect, and that all of us are in different places of understanding. And lastly, I would make church events as easy as possible for my son. I’d worry less about who was watching our family circus.

7. I WOULD HAVE LAUGHED MORE. There’s a LOT of humor in Autism itself, and I would have laughed more rather than been embarrassed by behavior or cried about it. I would have laughed more at myself when I made mistakes, and laughed more with my son when HE did.

8. I WOULD HAVE LIVED MORE IN THE PRESENT. I would STOP worrying about the “what ifs” of the future and stay in the PRESENT. I would rejoice with what my son is able to do TODAY and not worry so much about tomorrow. I’d certainly keep hope for my son to have a bright future, but I’d worry about it less. I would make up my mind to be happy for other friends’ successes with their children. I would cry more happy tears for my friends and less sad tears for me. I’d remember that “Rome wasn’t built in a day, and neither will my son with Autism.” I’d take it one day at a time, one goal at a time, and not worry about accomplishing it all TODAY.

9. I WOULD HAVE FOCUSED ON BUILDING A CLOSER RELATIONSHIP FIRST RATHER THAN “FIXING” MY SON’S BEHAVIORS. If someone had told me sooner to establish relationships and connections FIRST, I would have done a much better job understanding what my son “needed,” rather than what I thought he needed. I would have thrown out everything I “thought” I knew about parenting, and instead learned how to “soft-parent,” right away, which is to react calmly and kindly, trying to figure out the “why” to behaviors rather than focus on the “what” he is doing or “how” he is behaving. I would have focused less on “discipline,” or fixing negative behaviors, and more on the lessons to be learned in a gentle and accepting way. And I wouldn't even pay attention to the onlookers who criticized me for "not disciplining" my child, rather I'd just smile and continue to parent as my SON needed, in that gentle and loving way.

10. I WOULD HAVE LOOKED FOR THE ROSES RATHER THAN THE THORNS. I would have tried to see the “good” in Autism instead of all the things that bothered me about it. I would have tried not to hate the disability; rather I would have tried to see the benefits. I would try to embrace what makes my son the special person he is rather than what the disability is making my son the person he is “not.”

And one last thought: “Being happy doesn't mean that everything is perfect. It means that you've decided to look beyond the imperfections.”

Grief and Unmet expectations

As a parent newly learning their child isn't a stereotypical normal child, you will have to endure a grief cycle like you have never known before.   There is no manual on how to raise a child and far less of a manual on how to parent a special needs child.  The cycle of grief is an enigma; no one can tell you how long it will last nor can anyone tell you it is a one time cycle.  

The first step in your grieving process will be denial.  "My daughter couldn't possibly be anything but perfect" or " He will grow out of it" are commonly the types of thoughts we might have.  Those thoughts will be replaced with grief and pain.  This step is very devastating; however, you have to choose to deal with these feelings.  If you don't face grief head on, you and your child will suffer more when you choose to face your grief.  Avoiding grief can cause physical symptoms that can cause your physical health to deteriorate and make your tasks to parent your baby more difficult.

Sometimes we attempt to put limits on our grieving process.  Just as it is impossible to know how we will handle and process the news of our child's health, but allowing pressure from outsiders to dictate that we should be over it will only exacerbate our ability to grief.   This is the time where many find a way to escape: buried in our work, choosing alcohol or drugs to numb our reality or keeping it all internal.  In the end, none of these mechanisms help the situation.

Time is your friend.  Give yourself time... and take it!  We are great at putting on our brave faces.  It's ok to cry!  There is no shame in needing to get the emotions out.  You can talk with other parents of special needs children for support.  While this might seem difficult, they can provide you hope.  They survived similar grief cycles and they are still breathing.  Keep a journal of your thoughts or join a support group.  In these darkest hours, only those who have walked similar paths can truly appreciate the trials you face ahead.

This next step for me was the hardest.  This is when guilt will pop up.  It is ugly.  It is unwanted.  Parents will start to ask themselves questions to try and explain the guilt we feel.

This often starts out with asking ourselves "what" and "what if" questions such as "What did I do to cause my child to be disabled?" or "What if I hadn't had that glass of wine before I knew I was pregnant?  Would my baby be ok?"  This is quickly followed by the "if only" statements and questions such as "If only we waited a little longer before having a baby."

Guilt is always looking for someone or something to blame.  While some of these questions might help to work out your grief, they mostly are looking for places to blame.  When we deal with unmet expectations, it is our nature to try and place blame somewhere, even if it's to blame ourselves.  In the case of a special needs child, sometimes there is no place to blame, but mostly it is not there.  Things happen.  Guilt serves no real purpose.  Acceptance of the situation will help take the guilt and blame to the past where it belongs.

Pursue thoughts and actions that will serve the positive purpose of reaching the end of guilt process in a healthy manner.

This Particular Life

I’m not sure what undid me.

Was it Charlie screaming and sobbing in the driveway about toy guns while I finally picked him up and plunked him thrashing in the car?

Was it visiting the same two pharmacies four times in two days to fill the one stupid new prescription for Charlie that no one seemed to be able to figure out?

Was it watching the psychiatrist furrow her brow in sympathy as I described Charlie’s willfulness, disinhibition, and general tendency to fall apart when things don’t go as planned?

It might have been holding my non-verbal and very scared ten-year-old down for two separate sets of X-rays on the arm that had a visible break.

It very well could’ve been restraining a screaming red-faced Jack as the orthopedist reset his angulated bone.

Maybe it was when Jack lunged at me and tried to bite me as we drove home from the doctor’s office when I wouldn’t help him take the splint and cast off his arm.

Or when he poured a can of a Coke Zero on my bag in the car.

I’m not really sure.

But sometime during the tense drive from the orthopedic clinic to our house, with my left hand gripping the wheel and my right hand pushing Jack away as he lunged at me in anger about the cast-covered splint stuck on his arm, I vividly remembered a line from The Fault in Our Stars.

In the movie version, Hazel sits on her back lawn talking to Augustus on the phone. She says, “I do not want this particular life.” She doesn’t want a different life so much as she wants the same relationships with Augustus and her parents, as well lungs that work. She wants a life free of cancer.

The thing about this particular life of mine is that it’s ruled by autism and cognitive delay and anxiety. And today I wanted it all to go to hell.

Then I remembered what my friend Kristi said at support group. She said when her little girl with Vici syndrome was tiny, she mourned all the things her baby couldn’t do and couldn’t be. She mourned that her family would never be normal.

She lost friends who couldn’t handle the complexity of her life and her daughter’s limitations. She cared for Lila constantly, even sleeping with her so she could hear the seizures and prevent aspiration. She lugged the suction machine everywhere they went. She lost herself in mothering her immobile little girl, and found something precious. Something better.

Kristi’s little tulip girl passed away this spring. Now her family is “normal” and she wishes they weren’t. She wants her blond, blue-eyed four-year-old daughter back, filling their home with light and her tangible spirit.

She wept over her plate of enchiladas when she told us, “My family isn’t special anymore.”

We fervently disagreed. We assured her that she will always be Lila’s mother, and that she is irrevocably, dearly special. That she has been since before she herself was even born. Lila’s gift to her mother was refinement.

My burden is different. The effacing, consuming, overwhelming parts are maybe not so different.

It’s not that I don’t want this particular life.

I mostly want the ability to handle it.

~~ Megan Goates, guest blogger

To follow Megan, please visit her blog at tooursurvival.com