Together We Can

When I first realized that there was something “wrong” with Caroline, I did not tell many people the extent of the problem. John and I suffered in silence. We did not stop volunteering for extra responsibilities at work, we did not bow out of bringing homemade snacks for Vivian’s class, and we did not sleep.  I did not want people feeling sorry for us.  But as things progressed and we could not hide some of the challenges we were facing-I became an open book. I felt like others could benefit from my experiences and my candor, so I shared.

I have navigated four different insurance policies and social service programs in three states since Caroline’s birth. My previous professional experience working for government and in nonprofits came in handy as it offered me a fundamental understanding of bureaucracy and advocacy.  This week, I hit a brick wall in terms of my ability to provide for my daughter.  You may have been following my attempts to get Caroline’s speech services covered by Cigna. I thought I had been successful; however, I learned this week that under the insurance policy offered by my employer Speech, OT, PT, and ABA are not services currently covered for those with a diagnosis of Autism.  I called Cigna and pleaded my case; they suggested I call my employer.  So I did just that, I called the VP of Talent.  He very politely explained that he could not make exception to allow these services to be covered for Caroline at this time. But he could offer a silver lininig: OT, PT, and Speech would be covered as of January 1, 2014.  I took a deep a breath and referenced the research that spoke about the importance of early intervention and intensive therapy—I choked back tears as I explained this decision could be the tipping point between my daughter, Caroline, being high functioning and being institutionalized as an adult. I explained that these four months are essential and that it would cost me $15,000 out of pocket to pay for Speech, OT, PT, and ABA.   He explained that as a parent he understands how difficult and emotional this must be but there was really nothing that could be done. Now logically, I know you catch more bees with honey but I also know I don’t have time to beat around the bush.  My employer was either going to be helpful or they weren't. I needed to know immediately so I could figure out my next move.

I have learned the hard way that having a child with special needs turns life into a game of chess. Every move needs to be calculated. One must always be thinking about the consequences of each and every action and this must all be done in a sleep deprived, highly emotional and stressed state. And believe me I know, life can always be worse. Today, I read a story about a loving mother who killed her severely autistic son because she could not receive the support she needed to treat the medical condition that exasperated his autism symptoms. Four years ago, I would have judged that mother and questioned her humanity--today, my heart aches for her son and for her.

In the moment,  when I was told there was nothing that could be done to get my daughter the medically necessary therapy she so desperately needs and I felt like I had exhausted all options I was mad, so mad. I was seeing red.  I could not think straight and I could not hold back the tears-strategy was not top of mind in that moment. All I could see was Caroline in an uncontrolled fit of rage because she was frustrated by her inability to communicate.  We had come so far, I had fought so hard every step of the way to make sure that Caroline was receiving the services and the support she needed—only to be shut down now. Now, that she was starting to really eat by mouth, now that she was saying “bye-bye” and “more”, now that she could walk up the stairs. We have overcome countless surgeries, feeding tubes, and daily therapy since she was six months old. I was not the parent who put her head in the sand when I saw a problem; I searched for an answer and for the best treatment options for my daughter.   I thought about taking FMLA so I could work with Caroline using some of the strategies I observed but I realized that we need the money I would receive from selling back my sick days.

I am angry and frustrated but mostly worried about Caroline’s future. I don’t where to point my anger anymore. Is it my employer’s fault, Cigna’s, mine, the government’s—who knows?  During this moment of crisis it is not prudent to wonder why this black hole of care exists—one that will likely bankrupt my family and many more like us. But rather, I need to focus on solutions that will allow Caroline to resume receiving much needed therapies.   

To help Caroline receive these much needed therapies donations can be made via giveForward.

Overcoming My Biggest Fear

Today, on Caroline's third birthday I am overwhelmed with emotion as I look back on all that we have been through and all that she has accomplished. My biggest fear entering motherhood was raising a child with special needs. Entering parenthood, I had already felt the pain of losing a child when my baby sister, Britney, passed away at the tender age of 9 and half (she was 18 years my junior). Thus, I became a mother already knowing and understanding that each day with any child I welcomed into this world was a gift and that tomorrow is not promised.  And to deal with the immense weight of that reality, I worked very hard to create an environment that would allow my children to thrive but also to experience life to the fullest at a young age.  For me the fear of raising a special needs child was two fold: I did not want to see my child live a life filled with pain and discomfort; and I did not know how to create an environment that allowed Caroline to experience life to the fullest given her medical and developmental challenges.

In a previous blog, I explained the challenges of bonding with Caroline as the pain of losing Brit was still so fresh.  And for that reason, it took me awhile to get to really know, Caroline. But now that I know Caroline and I see all that she is capable of I know how to create environment that allows her to thrive and makes her happy.  Caroline has an infectiously happy and curious personality.  Her lack of boundaries allows her to wander in the hearts of many. She is tiny but mighty; calm but excitable; distant but loving; and intense yet passive.  Raising child filled with these contradictions is both rewarding and challenging.  I have realized that by embracing Caroline's passions and following her lead, I can not only provide her the tools she needs to thrive but also the experiences that make her happy.

[caption id="attachment_941" align="alignleft" width="300"] Caroline at the pet store to see frogs as part of her birthday celebration.[/caption]

Today, on Caroline's 3rd birthday I realized that big party was not the appropriate way to celebrate.  John and I spent a lot of time thinking about what Caroline was interested in lately and crafted a weekend around her interests.  Caroline LOVES pizza and garlic bread so we went to pizza place for lunch; we bought her a toy frog that sings and spits water for the bath and allowed her to take an extra long bath, we went to the pet store to look at frogs (her newest obsession) and have plans to go swimming (Caroline has always loved to swim) and to go see a movie (Caroline loves popcorn, music and the bright colors in movies--my little sensory junkie).

Caroline has helped me to not only overcome my biggest fear of parenting a medically involved child with special needs but has showed me how rewarding it can be.  She has taught me that the simple pleasures in life should not be overlooked and just because today is a bad day doesn't mean tomorrow has to be. Caroline has also taught me the importance of asking for help--I am so thankful to the many amazing therapists, teachers and doctors who have helped Caroline overcome so many challenges and achieve so much. Self interest, rightly understood, I am also thankful to these same individuals for offering me perspective, a shoulder to cry on, or a friendly ear as needed.   I understand it takes a village and I am so thankfully for the village that has contributed to and shares Caroline's successes. And of course, when considering all those who have contributed to Caroline's success and growth I cannot, thank my husband, John, enough for always seeing Caroline as perfect; Vivian for being an understanding big sister, my dad for spending months taking care of Caroline and demonstrating a tenderness and patience I did not know he was capable of--there have of course, been many others who share Caroline's success and who have supported our family during the dark times and to each of you, I am forever thankful.

Happy 3rd Birthday, Sweet Caroline--I can't wait to see what you will accomplish this year!

Cigna's Response Highlights the Need for Insurance Reform

After writing my last entry, I tweeted it and shared across several social platforms.  Via Twitter, Tim from Cigna requested that I send him an email so he could further look into my issue. At least Cigna was responsive via social media, I thought to myself as I drafted a quick but polite email to Tim.

As you will see from Tim's response below, he told me what the representative on the phone already told me--so in fact the only thing he did was waste more of my time. I understand he was doing his job and following the standard operating procedures established by executives whose bonuses could pay for Caroline's therapy for a year, but still I am frustrated. 

Tim's response:

Hello Kacie,

Thank you for taking to the time to e-mail me your information. I was able to research your account this evening and unfortunately I do have some bad news. Since you are an OAP member with in and out of network benefits we are unable to complete a network adequacy appeal. I know this is not the answer you were looking for and I tried to see if there was anything I could do internally, however this is a standard operating procedure for PPO and OAP plans in relation to ancillary services. I am truly sorry for the inconvenience this has caused you and your family and I hope that in the future we can establish a broader network of speech therapist in your area. I know that I wasn't able to give you the answers you were looking for with this issue, but if there is anything that I can do to help you in the future please feel free to email me. I wish you and Caroline the best of luck and hope you enjoy the rest of your week.

Tim

Please like this post if you are frustrated with insurance companies.

Cue the Violins

I took today off of work, I was hoping to get caught up on scheduling a lot of Caroline's appointments. Instead I felt guilty about falling behind at work and spent the day fighting with Cigna.  I am MAD, fighting mad--life is not supposed to be this hard.  I try very hard to be helpful to people in every aspect of my life but I feel like that kindness is rarely returned. I know cue the violins---I am totally feeling sorry for myself.

Today, I got a call back from the office of a speech therapist who I would like to work with Caroline.  She explained how my benefits would work for both in network and out of network coverage. It boils down to in network--I pay $0 for up to 100 visits, out of network, I have to pay 40% of each visit which comes out a little over $1,100 a month--this is only for speech therapy.  I called Cigna to find out if there were any in network providers in my area. Turns out there are none, one is listed but it is a wrong number.  So the customer service representative explained to me that I could apply for a network exemption because there are no speech therapists contracted with Cigna in a 40 mile radius--great.  So I call the therapist back and get the necessary information. I call Cigna back, explain to the customer service rep what I am trying to do, she says no problem and transfers me to pre-authorization.  Well, the woman in pre-authorization explains to me that network exemptions are only allowed for specialists, speech therapy is considered an ancillary service.  She actually said, "I don't want to sound rude but you could drive over 40 miles or use your out of network benefit. You know people with an HMO don't have the option of going out of network."

Wow! Just wow! I did not know it was possible to literally blow my top---if I could reached through the phone... Instead I inhaled and loudly asked,  "Do you know how much I pay a month in premiums, much, much more than someone with an HMO. Also if you look at my record you will see that I met my out of pocket max some time ago so you can surmise the cost of my annual medical bills. And the very fact that you would suggest I could drive 40+ miles, one way, at least twice a week, when my daughter needs to receive three forms of therapy on a weekly basis and is currently followed by 10+ specialists shows how callous you and Cigna are. I wonder how do you sleep at night knowing that you work for a company that crafts policies to limit payment of medically necessary services to medically involved children with disabilities because you know their parents don't have the time to fight the system...no really how do you sleep at night?"

She did not take kindly to my question and just kept asking if there was anything else she could do to help me. I made a few suggestions including sending a donation to help pay for my daughter's medically necessary speech therapy.  She did not ask for my current address so I am not really holding my breath for her donation.

I am also gearing up for the second installment of Caroline's IEP meeting.  We have several appointments scheduled with specialists to address a myriad of issues ranging from possible asthma to ruling out vision issues.  There are not enough hours in the day to coordinate Caroline's care, work full-time, and be a wife and mother.   My hair is falling out and for the first time in my life I have high blood pressure. Having said that, I have to say that despite the stress for the first time in a long time, I am happy. Thank you, Lexapro. I am realist--I know when I need the help of chemistry to get by.  I am trying so hard to find balance and to roll with the punches but my body knows how stressed I am, despite my efforts to convince it otherwise.

So today, I am feeling sorry for myself--because I have to spend so much time fighting for the care Caroline so desperately needs--time that I would much rather spend with her, because the money I work so hard for cannot go for a down payment on house but rather will be spent on therapies that insurance should pay for, because I am always so tired, because I don't have time for real therapy so I over-share via my blog, and because I am mentally, physically, and emotionally exhausted.  Tomorrow, I will put the violins away and rally.

How do you keep going? Where do you find the strength to keep fighting?

--written as I pack for a business trip to Georgia.

A Day of Celebration Becomes a Day of Remembrance

I nearly remember when August 6^th was a day of celebration rather than a day of remembrance.  It is hard to believe it has been the latter for five years.  Britney would be celebrating her 15^th birthday today.  Sometimes, I try to think about what she would be interested and how much she would have grown and matured in the five year since she was taken from us—but mostly, I remember her just how she was.

Brit and I had a special bond, one that was not easily described.  I cut her umbilical cord, I helped her learn how to ride a two-wheeler and I held her hand as she left this world.  Sandwiched in between, Brit taught me about the importance of life.  Brit loved like she had never been hurt, danced like no one was watching, and tried until she got it right.  Her insight and perspective was spot-on. I like to think that the way Brit led her life was a reminder that, that which we value in childhood is that which we should value throughout our life.

Today, on what would have been Brit’s 15^th birthday, instead of having a huge celebration- I will gather with my family after work to remember Brit, privately. But as Brit loved to be the center of attention and to know that people were talking about her-I will share this post in her memory. If you remember Brit, I encourage you to talk about her today.  One of the hardest things about losing Brit is the fear that others will forget her so please don’t let my fear become a reality—talk about her, keep Brit’s memory alive. 

In loving memory of Britney Nicole Wielgus-you will forever be my favorite. Rest in peace, my love.