Saturday, August 15, 2009

New School Year, New Problems






So while working at LSU has its advantages, it also has its pitfalls. Brad and I were certain to see furloughs, however as we stand on the pendulum platform that is the Louisiana Legislature, for now has swung back over to prevent staff furloughs, for now.

In Braden's world... things are also just as shaky. His health is pretty good, but of course we are experiencing the usual August yuckiness that comes with the stickiness of the heavy air and oppressive humidity. The shakiness is at the same mercy our jobs are, to the "great" state of Louisiana. But we are still blessed, and finally have pics to share of Braden in his new bath chair that therapist Gayla snagged for us - THANK YOU MISS GAYLA!!

A terrible tragedy occurred here this summer, when a local daycare left a child in a van on a hot day, and the child did not live. While this daycare had been cited many times before for various violations, the state is now trying to avoid liabilities... and has therefore created a state-wide "crackdown" on all licensed daycares. While we are in full support of efforts to ensure child safety, we are quickly learning that some of the policies that were once enforced, are now once again coming into the picture, and some of them do not make any sense at all.

Kidz Korner, where Braden goes, as most of you know has been one of about 40 daycares we contacted in Baton Rouge that did NOT break the laws by ourightly refusing to serve a special needs family. While there is no state agency out there enforcing daycares to uphold federal disability rights law, they certainly have policies in place to make things incredibly difficult for the few out there who do the right thing.

So now we are a family in action to once again stand up for the rights of parents everywhere, not just special needs families. The DSS office in LA is attempting to dictate exactly HOW we choose to administer medicine to Braden. CAN YOU BELIEVE THIS?? Now I'm no lawyer, but I do have common sense - does this seem right to you? How can ANYONE other than his parents determine how my child is medically treated? Even his doctors can only offer recommendations, and it's our choice as parents how to treat our child. So now we've rattled the cages at Dept of Social Services who is over licensing of daycares, plan on getting the Dept of Health & Hospitals involved, and have put in calls to advocacy groups and family law/rights attorneys.

DSS is saying that we must bring Braden's entire medicine cabinet to daycare every day, so that she can administer his medication. Since Braden was born, we as a family decided that only one person a day would ever administer medication, for Braden's protection to ensure his safety. This way it could help prevent any accidental overdosing or underdosing. Not fool-proof, but less chance of accidental medication issues.

And when you look at the photos I've attached, note that this is Braden's medication for ONE DAY, and does not include his nebulized medications with his vest therapy in the mornings and evenings. Can you imagine the ADDITIONAL liability LaTacia would face if she were to administer these daily? The state says that there policy is to "protect" her.

But let me give you a real-life scenario about why this scares me to my core: if Braden had ADD or ADHD, it would be OUR CHOICE as his parents to medicate, or not to medicate. A friend of mine has two children, one with ADD and another with ADHD. When in the care of another, these children each had their own medication to take, and the caregiver accidentally gave the wrong one to one of the kids! Now this incident did not have detrimental life-threatening results... but in a case of an epileptic, medication mix-ups can have detrimental results! Now the state wants to tell me that my childcare provider needs to administer Braden's 11+ medications and try not to get the dosage and times mixed up when she's running a daycare?

So we will keep you posted on the outcome of our newest fight with the state of Louisiana, and the existence of policies and procedures that were designed by folks with NO medical background, NO special needs experience, and NO understanding of the additional stress and strain they are going to put on families who are barely hanging on as it is. I fear that until we have more lawmakers living with special needs children, our nation will continue to ignore the hell their laws put these families through just trying to survive and get by.

For now, just pray that we will be able to break through the walls of ignorance, misunderstanding, uneducation of reality, and unreasonable policies that exist... and pray for our strength to mount a fight that just might parallel David vs Goliath. We thank you for your continued support and prayers!!

The Wilson family,
Brad, Kodi & Braden

3 comments:

Jaime said...

WOW!! Keep up the battle. I hear you about daycares and meds. I have had daycares outright say NO when I ask if they will take a special needs child. I have gone to ADA enforcement agencies and have gotten nowhere. When you find one who is good AND will take your child, you can't let go!

I understand about medications. I give Emma her meds at 7 am and 7 pm so that I am the ONLY person administering them to her and can keep track of them being given. It's an antiepileptic drug, so of course, being on a schedule is important and the liability of someone else taking on the responsibility? No thank you.

Keep up the fight! You guys are my heroes :)

PS Love the bath chair

Nicole said...

Kodi, please let us know how we can help. If it involves writing, calling, etc. We may not be in Louisiana anymore, but everyone we know and love is! I'm happy to mobilize support.

Jeanie said...

Kodi, I'm Nicole's mom and I do live in LA in Baton Rouge. Many years ago I worked with the DHH and in recent past years I've lobbied in the legislature for various issues; mainly my job as a court reporter. I'm not sure where to go with this at the moment, having read and considered the avenues you've mentioned so far. But...I will start looking into this and asking questions about where to go from there. I truly admire your courage. Keep up the fight, and I will be in contact. Jeanie Louque