I have quite a filter. You may not think it, but I do. I try to be careful with my spoken words because you can’t take them back.  There are situations when I should remove the filter, but am usually so caught off guard by what is said and can’t find the right words until after I process the statement. I guess that is why I love to write my feelings down. Of course, I usually do nothing with these written feelings, but it feels therapeutic to get the words out so I can move on.

I also like to remove myself from the statement for a few days and feel if it warrants a conversation with the person, I will revisit the topic. In terms of my writing today, I have had time to process and am going to take a deep breath and revisit it right here. It needs to be addressed and I need to explain something that many may not even know about.

Here is the background… Recently, I mentioned that Camryn had Medical Assistance and a person I wasn’t even speaking too interjected their thoughts on Medical Assistance questioning if it was wrong that I had it. She stated that it was income based and suggested that I was “double-dipping” because of my primary health care coverage.

WHAT???? DOUBLE-DIPPING? First of all, when Camryn was born I didn’t dream of having Personal Choice and Keystone Mercy. I didn’t even know anything about secondary insurance because WHY WOULD I?

When Camryn was one year old, a social worker came to my house and explained to me that we need to apply for Medical Assistance. She gave me a mound of paperwork to fill out, told me to read about it Medical Assistance so I could decide on a carrier and left my house. I will never forget that this was a day full of grieving.

Let me explain to you why a child qualifies for Medical Assistance. A child qualifies because their physical or medical condition seriously limits the child’s activities and the condition must last more than a year. At year a 11, I guess you could say we are good candidates. MA is the payer of last resort if you have private healthcare coverage. It only gets billed if the primary doesn’t cover the insurance. It is not income based.

Do you think after I read this, I felt excited about this help we were receiving?  At that point I was a 27 year old who read those words and tried to process that this was going away. That was a hard pill to swallow, but I gave myself a few days of feeling sorry for myself and went into battle mode.

Trust me these words this person spoke about “double dipping” did not speak life into me, but they did speak life on how people just don’t get it. I guess if you don’t live with me, you have no clue what my life is like. Over the past 11 years we have been blessed by Medical Assistance. The help has allowed us to get additional therapy for Camryn. That meant at a young age we could do PT, OT and Speech several times a week. We could take her to Genetics, Developmental Pediatricians and countless doctor appointments.

But of course it didn’t cover everything. The alternative therapies, the doctors out of network, the GFCF diet, and the list goes on.

I have no regrets about anything I did for Camryn. I never took no for an answer, I tried everything and will continue to do that and if Medical Assistance can help me, then all the better.

Camryn is 11 and in 10 years it is going to get harder to get services for her. Behind closed doors I am sure this person has no clue that she can’t brush her teeth, let herself into the house in the afternoon, that she reads on a first grade level, can’t wipe herself, can’t shower herself. She has two surgeries scheduled for the next month and is allergic to anesthesia. This person doesn’t know because I would never complain about being Camryn’s Mom.

This is my job, my duty, my purpose and my life calling. I have the ability everyday to work with an angel and she has the ability everyday to show us God’s perfection. She is perfect in His eyes and that is all that matters. She also has helped her sister’s become mini advocates and that is something they will carry with them forever.

If you ever wondered why the lucky people get Medical Assistance, I hope this explains it and for the record, the only thing I double dip is my black raspberry ice cream at Nelsons.

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7 Comments

  1. Rebecca Dampf on October 16, 2016 at 9:43 am

    You couldn’t have said this more perfectly. So much of the public has no idea.



  2. ruth m sill on October 16, 2016 at 9:51 am

    So well said. I try really hard to be gracious to those who have NO idea…and after having our lives impacted by disability.for 27+ years…there are still words, spoken directly or insinuated…that take me completely off guard…I have to dig the filter out, dust it off…and decide whether it’s worth another round of education….or do I just let it go…



  3. Kellyann Mitchell on October 16, 2016 at 11:53 am

    Oh Kristi does this post resonate with me! I have had a similar experience sharing about Cullen’s medical assistance to another mom thinking I was helping her & was surprised & disappointed in her response. People that don’t live don’t get it. Insurance doesn’t cover everything & when you have a child that needs so many services or sees so many Dr’s & needs to get so many medical procedures knowing that I won’t lose the house over paying bills takes one thing on this Mommas plate. Every one in awhile I feel a pang of guilt & then I think screw that who ever wants to trade places with me and my life be my guest. MA is a relief & a help that we would gladly prefer to not need at all but since it is offered I say yes, please & thank you Lord.



  4. John Clow on October 16, 2016 at 5:04 pm

    It seems that those who are well off or have perfect lives are the ones who point fingers at those who ‘take advantage’ of these provisions. I am not for socialism but I do believe God has allowed some of the support systems for those in extenuating circumstances. Being close to ‘taking advantage’ of some of these support systems myself, I am thankful to God for them and am thankful they are there for you!



  5. Mom on October 16, 2016 at 7:11 pm

    Kristi,
    I marvel at your ability to advocate for our beautiful and angelic Camryn Grace. You meet every situation head on but with grace and diplomacy. Mama bears protect their cubs! You protect Camryn from sitting on the sidelines of life by trying to get her everything that will improve her growth and development. Yes, you do get Medical Assistance. I know for a fact that you did not seek this and felt somewhat guilty about receiving help. However, when you saw that it could help Camryn to achieve goals that most children achieve on their own, you went full force to use whatever is available for her. Way to go, honey! You are relentless in finding any help or services that will allow Camryn to maintain the quality of life she deserves.

    I am very proud of you, daughter! Never, ever let go of your dreams for Camryn!



  6. Regina Inverso Lovelidge on October 17, 2016 at 11:10 pm

    Kristi,

    Your strength and determination is most likely how your daughter was able to get the OT, PT and speech she deserves! not to mention everything else! Keep on fighting. I have a cousin who is constantly advocating for her child, she is amazing. Sometimes, the assistance is dropped and the therapy is stopped. She again has to be on the phone, complete paper work after paperwork. This consumes so much time and energy. Reading your blog today reminded me of her and the constant up hill battles she faces for her child. Because of her strength , her child has surpassed any doctors expectation. I can only imagine you go through the same but of course would not complain about it. You rose above the ignorance! Thank you for sharing.



  7. Karen D Kenny on November 3, 2016 at 1:15 pm

    Well said, as a person who has worked in the field of Intellectual Disabilities over 30 years. You
    are a wonderful advocate for Camryn.



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