Medicaid in Alabama!

     Medicaid in Alabama!  Cuts to medicaid.  Lawmakers in the state saying it is too costly, they're not the only ones saying that, some citizens of the state say the same as the lawmakers that represent them.  Back in the Spring of this year, I was asked by my program director if I would attend a press conference at the state house on Medicaid.  She told me to prepare a 2 minute statement on how Kerstin has benefited from medicaid and how possible cuts would impact her life.  My first thought was 2 minutes to tell how a lifetime of much needed insurance has helped save my daughter's life and secondly, me, her mom, saying sharing some of our life story in front of a room full of reporters, law makers, advocates and strangers!  

     How was I going to do this?  As always, with Kerstin by my side and my older sister being our personal photographer.  I shared just some of what potential cuts could mean for Kerstin.  In order to get there, you'd have to know her story.  Kerstin has had 4 surgeries, 3 in one year, just a few years ago, she's had a few hospital stays, thankfully the last one back in May was not from an illness at the time but for a seizure study.  Aside from hospital stays, Kerstin requires numerous medicines and medical supplies to live...survive!  There are medicines for seizures, spasticity, along with her nutritional and feeding needs.  Without medicaid, it would be extremely difficult and near impossible to supply all of these needs for Kerstin on a part-time income.  
     I reported that the Pediasure Kerstin was on at the time cost about $11 per six pack, if you bought them in Walmart, that was just for the regular Pediasure not the specialized kind that she needs because of stomach sensitivities.  Pricing this on a site like Amazon, the cost is significantly higher, for a 24 pack, it is priced at $136.78.  That case would not last her a week!!   Because Kerstin is a growing child and her nutritional needs have changed, the new therapeutic nutrition she requires has changed as well, it is much higher in cost, $209.97 for a 24 count case.  Imagine having to pay those costs out of pocket and on a weekly basis just so that she could eat.  These costs do not even touch her medicines, or things like her feeding tubes, extension sets, syringes and diapers (wipes aren't even covered by medicaid).  Medicaid, makes all of this possible for Kerstin's survival.
     Along with all of her medicines and nutritional needs, Kerstin has a number of therapists, doctors and specialists.  These necessities are paid through medicaid.  Kerstin and patients on medicaid go to the same doctors, therapists, drug stores and use the same medical suppliers as patients with private insurances.  The thing that seems to be left unsaid is that, if medicaid is severely cut, that means that these same agencies, organizations and medical professionals may make cuts or leave the state altogether.  If that happens, my child is and people on medicaid are not the only ones without needed medical suppliers and providers.  These cuts could have negative and potentially harmful impacts throughout.  
     There are so many misconceptions out there about medicaid.  Some being that, the program is misused and that many people on it actually do not need the services.  I beg to differ, especially when it comes to my daughter.  As I said, in an earlier interview, she is a constituent of this state and needs all of the benefits because of her medical needs.  I am a part-time worker, part-time student, full-time mom and now a home school educator to Kerstin.  
     Just this month, Kerstin and I were interviewed again for continued input on medicaid in our state and it's potential cuts.  It is my hope that humanity is at the forefront of this story.  She was filmed at therapy, a much needed resource paid for by medicaid, then she was filmed at 'therapy'...her routine after therapy trip to Target (not paid by medicaid, lol).  

That portion has not been aired, dates to be announced. 

Reports:

WSFA :I am Medicaid' campaign aims to show lawmakers the humanity of what's at stake

Raycom News Network

Anniston Star

Some People Just Don't Understand!

     Some people just don't understand!  Remember DJ Jazzy Jeff and The Fresh Prince's "Parent Just Don't Understand"?  In the song from 1988, Will (The Fresh Prince) talks about how parents are all the same, all across the land...they just don't understand their kids. He goes on and on about how his mom made, in his opinion bad choices about the style of clothes and many other things parents and their children did not agree on.  

     This post isn't about parents misunderstanding their children or vice versa.  Like the subject states, "Some People Just Don't Understand".  As we all are pretty much aware, the very arrogant Kanye West went on a rant at one of his recent concerts and basically demanded that everyone in the audience stand in his honor.  He apparently became offended when some patrons did NOT stand, not because they didn't want to but because they couldn't!  This fact had to be verified by his (Kanye's) handlers.  Shameful!  

     No national outrage of this man's ignorance.  This story didn't make it's rounds on the evening news.  However, parents of children with disabilities and adults living with disabilities were very much outraged!  I know I was and still am!  My daughter loves music and I know, if she could she would be dancing and singing to her favorite tunes!  The actions Kanye showed at his concert and the blatant arrogance he showed after the fact is often expressed by many, in more subtle ways.  So many people say things that shows that they have no full understanding of what it is like to live with a disability or to care for a person with one.  

     When you factor that in, it is, as a presenter said at a conference I recently attended, ignorance.  Ignorance is when there is a lack of knowledge.  We have all been ignorant to many things in life.  You have no knowledge of something until you learn about it.  So, why was Kanye still ignorant on the entire audience standing?  That was both ignorance and arrogance.  What do you call it when you're in church(es) and you hear things like "you're not blessed" or "if the Lord's done anything, you should stand..."?  I'm not sure, and I don't care what the world thinks the Lord has or hasn't done for me.  I will continue to sit with and beside my daughter and many others that cannot stand in the face of  those that just don't understand or just don't care!

     So, Kanye and preachers and church folk around the world, the little music lover in the picture below, isn't able to stand on her own right now, she is beyond blessed and loved.  Her mom (me) is her biggest fan and number one supporter...I sit with her and stand for her and I am a voice for her! 

"Momma's daughter :))

"The newsletters came in today!!"

     That was the title of an email I received from our parent consultant on last Monday!  This is the same lady that called me earlier this year and told me that I needed to write an article for the CRS Parent Connection newsletter.  At first I had told her that I wouldn't know what to write, she informed me that she had been reading this very blog!  I couldn't deny that I was in fact, attempting to write!

     Took me a few days, wondering what to write about.  I thought about the audience...Parents, like me, dealing with similar issues, raising our children while trying to maintain our own personal lives and our sanity!  What did I want these parent to hear from someone that may be on a comparable journey?  I thought about Kerstin and how she has and still endures so much on a daily basis.  I knew that there were parents out there that would see this newsletter and they know that their child is loved and gives them the strength they need!

     "You make it look easy!"  That title came to me and I knew I had to go with it.  I have been told countless times, that I make things look easy when it comes to caring for Kerstin.  It only seems that way because I have to do them.  I have to care for her.  I have to be her voice, her legs, her caretaker, her comforter but most importantly, I have to be her sometimes sane MOM.

     I hope to submit another article sometime in the future.  That one was written as encouragement to other parents and to push myself out of a comfort zone.  I am published in a paper that will be read read by parents across the state of Alabama and possibly beyond.  We are on a journey, growing each day, hence, "Growing With Kerstin".  

     If you want a copy of this newsletter, please inbox me on Facebook-Growing With Kerstin.  To get future copies please send your name and address to:

Susan Colburn

Children's Rehabilitation Services

602 S. Lawrence St.

Montgomery, AL 36104

     

Access for everyone!

     While working on a class assignment, I came across somewhat of a challenge for everyone.  I will include it later in the post.  This challenge made me think about what I have experienced in the past week.  After Kerstin's therapy appointment last week, I had to go to the Sears Repair store to pick up some things for the lawn mower.  This was my first time going to this location.  I must say it was an eye opening experience.

     The experience was so touching, I had to tweet Sears about it and I've sent an email to Americans with Disabilities Act (ADA) about this and the need for better changing tables/stations in public family restrooms.  We, my daughter, my 10 year old and 4 year old nieces pull into the parking lot.  There are faint lines for accessible parking, Great.  No one was unnecessarily parked there, even better!  The store has steps/stairs to the entrance door and NO ramped access!  NOT GOOD at all!  I had to leave my daughter and nieces in the vehicle, running so that they could have air.  I had to ask the 10 year to lock all the doors until I returned.

Access for everyone!

     A few days later, I mentioned the experience to my sister.  She said something so critical yet, something I know many people do each and everyday.  When you have the ability and use of all limbs and can climb stairs without incident you don't think of those among us who cannot do the same.  

     So, I will challenge you to try this.  I think it's worth it. I even posted it to Facebook/Growing With Kerstin. 

Worth the experiment! Please take notes and share if you don't mind.

Many of us take for granted our ability to come and go as we please. With the exception of a few buildings, which are off-limits to the general public, we are free to enter any building we wish, whenever
we wish. During the next week, keep track of the buildings you enter, the streets you cross, and the activities in which you participate.

* How accessible are these to persons who are in wheelchairs, blind, or hearing impaired?
* Are the room numbers in your building labeled in Braille?
* Are the steps ramped or is there an accessible lift or an elevator?
* What areas have not been made accessible to these individuals?
* How does accessibility limit their participation in the activities in which you regularly participate?
* How could these areas be made more accessible to individuals with disabilities?

Name change...new things

I decided to change the name of this blog from "Life: Just a mom raising a child with "special needs"" to "Growing with Kerstin: Raising a child with "special needs".  Why?  I am doing just that, I am growing every single day.  I am growing as Kerstin grows.  Growing in my faith.  Growing in knowledge.  Growing in awareness.   Growing in and with respect.  

All of this growing that is taking place within and around me is happening while I watch my daughter grow each and everyday.  She is growing to be a young lady that is loved more than the day before.  That love is not only from me, her mom but, it is from so many people around her. 

Kerstin is a trailblazer!!! I am blessed to be on this trailblazing journey with my daughter.  The things I fight for for her will benefit so many other children and adults with special needs and their families.  

So, we are growing and I am so excited.  I cannot wait to continue to share our journey and impressions left because I am no longer silent or afraid to advocate for Kerstin!

More to come...after all, we are GROWING,

A Little Determination...

These pictures are the proof that a little advocacy and determination goes a really long way!!!

It is also a reminder to MYSELF to never give up, stay visible, vocal and focused!  I am an advocate for my child and others living with disabilities!

April 27, 2013

March 18, 2014

Comparative photo

More to come...

If Kerstin could...

Yeah, I'm in another one of those slumps of "what if?" or "If Kerstin could..."  Sometimes I hate these moments, and at other times, I'm hopeful.  Hopeful, because there's always a possibility, faith is like that!  Faith gives you courage.  Faith lets you know, that your "what ifs" can be possible.

Lately, I've been thinking, if Kerstin could talk, I know this little girl would be as sassy as they come, she's that already.

If Kerstin could talk, walk, sit on her own, dress herself, do the things other children do, I would not have to go to school with her everyday.  I wouldn't have to worry so much because, if something went wrong, anywhere, she could tell me!  If she could dress herself, it would not take us so long to leave the house and we wouldn't have to start hours before its time for us to leave.

If Kerstin could feed herself, there would be no need for the g-tube, the Kangaroo pump for continuous overnight feedings, all the boxes of Mic-Key sets, the bolus syringes, the feeding bags or Pedisure that has taken over a corner of our kitchen.

If Kerstin could walk, I would not have to load and unload a 59 pound wheelchair everyday, then lift her in and out of our vehicle.

If Kerstin could sit on her own, there would be no need for a car seat, she could even ride in the front seat with me.  I still may do that, once I've consulted her therapist and see if the car seat can be installed in the front passenger seat!

I could go on and on...but, there's no need to.  We are living the life we were intended to.  We are in the postition that we need to be in for this time.

If all of these things were reversed and Kerstin was another child... I would not be the person I am today.  I would not have found this voice to speak up when things are not right for children and adults with disabilities.  I would not have found the voice to be the advocate that I am.

If Kerstin had been another child...I would be silent and things would not have taken place the way they have.

I like to sing (or try) along  to these lyrics to Kerstin, she knows it and I have to always remember these words myself...

"When I see your face

There's not a thing that I would change

'Cause you're amazing

Just the way you are

And when you smile

The whole world stops and stares for a while

'Cause girl, you're amazing

Just the way you are..."

~Bruno Mars

 She is...Kerstin is amazing, just the way she is!

*After the Super Bowl last night, I knew I had to add this song, if you could have seen her smile...*