Busy making forward motion Part 1

Sigh…yeah I’ve been busy and have only been doing silly “Adventures in Lunchdome” posts as of late.  It’s not that I’ve been lazy to write, nor is it that I have some sort of writers block.  Rather it’s forward momentum.  Moving forward how you’re probably wondering?  So much has been happening here in the Strongheart household this last couple months.  I’ve been meaning and wanting to write about it all but just can’t seem to find the time much less energy to do so.

What could possibly be going on, that’s what you’re thinking isn’t it?  Hmm where to start…let’s see….hmm.  Well y’all know that Cece is now in Kindergarten full time.  Before she started kindergarten we had something major happen.  As I’ve mentioned before, I’ve been working on getting Cece Medicaid/CHB waiver services.  This has been quite a task in and of itself.  A few months ago I did a couple of posts of excitement  ranging from “YES” to a video of the song “Celebration” by Kool and the Gang but never got around to explaining exactly WHAT was all my excitement about.

For 16 months I’d been trying to get services for Cece to help with her disability.  It was a long and hard task but in July all of our hardwork finally came to fruition.  Cece was finally accepted into the waiver program and we were one step closer to getting her more services.  The next step was to do what’s called a “Level of Care” assessment.  The State sent someone to interview her OT therapist, respite worker and me.  This person asked questions that we used a rating system to answer to help them determine how much care Cece require everyday.

For me, it was not an easy thing to do.  You’re asked things about if she can go to the bathroom by herself and you have to answer with a rating of 0-5, 0 being that she never or very very rarely does that or 5 being that she does it successfully by herself and 2,3,or 4 for varying degrees in between.  The lady would ask me something and I’d answer and then she’s give examples of each number and then most of the time I’d end up changing my answer to a lower number.  It was a very hard thing to do.  I quickly realized that the mass majority of things she was asking were things that Cecelia could not do without help or at all.

About a week later we received the results of these interviews.  It was a bittersweet moment.  For they found that YES Cece did meet the “Level of Care” requirements  necessary for the program but when reading the entire report I came to find out that although Cece is 5 years old she requires the level of care of a 20 month old baby/toddler.  That was a blow that knocked the wind right out of me. The equivalent of a 20 month old.  Here’s Glenna the baby sister who is 32 months old at that time that requires less care/help than they were saying Cece did.  Now don’t get me wrong, I knew that it was low and I knew that she required a lot…A LOT…of extra care but to see that statement in black and white…yeah…it knocked the wind out of me for a bit.

A few days later I got a call from the court to have a quick court hearing because the state was dropping their case and giving services to Cece.  Then a few days after that the actual court papers came in the mail with that decision in black and white right there in my hands.  I don’t think that there have been very many times in my lifetime that I’ve have been totally overwhelmed with emotion so as to cause me to literally “SOB” but holding that letter in my hand was definitely one of them.  There was absolutely no holding it back.  I physically gasped and then started sobbing with overwhelming relief, happiness, amazement, joy, etc.  All the hardwork for 16 months had finally come to a head and we won!

Now we have one more step to do.  The last step is developing a “Plan of Care” (POC) for Cece that outlines what services, how much, etc that she’ll receive from the waiver.  This is then sent into the State to get approved and once approved we’ll implement it.

So are you curious about what exactly is Cecelia’s POC?  Well let me tell you that it’s not anything short and easy.  Oh no!  This document that is written by her care coordinator is very long and very indepth.  Not only does it discuss services and hours but also it discusses everything from food allergies and vitamins to how to recognize a meltdown coming and what forms of communication Cece uses.  It’s all inclusive.  It outlines not only the services but also the hours of each service per week and what the goals for each service are.

The services we’ll be utilizing are:  Respite (2 hours per week), Day Habilitation ( 14 hours per week) and In-home supports (5 hours per week).  I had to come up with what I thought would be a good schedule for these services.  I did so but in doing this I had to just guess how Cece would handle Kindergarten.  It was still summer vacation when we were drafting/writing this POC, I had no idea how she was going to handle full days at kindergarten.  Plus I had to figure out how to work her therapy hours in so that she didn’t lose those hours.

We finished the POC and shipped it off to the State, then school started and Cece did awesome with full days.  Hmm well now I had to go back and change all the hours because I didn’t want to pull her from school early.  She was handing full days and had built up her stamina over the summer.   So that led to trying to figure out how to utilize the waiver services without overly disrupting not only her school time but also allowing us some family time with no workers too.

To be continued… 😀

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About annstrongheart

About me...hmmm where to start. I'm a proud single/widowed mom of two beautiful girls who currently works full time for the local Tribe. Life. Is. AWESOME!
This entry was posted in Ann Strongheart, autism, disability, parenting, single mom and tagged , , , , . Bookmark the permalink.

2 Responses to Busy making forward motion Part 1

  1. Glad for all of you that this is happening and she’s doing so well at school. Brings home, though, how much effort must be put in by the parent of a special needs child. It continues endlessly – making sure the daily reports come from the teacher, meeting with the caregivers, monitoring safety and security. You are an awesome parent, Ann!

    • annstrongheart says:

      Thanks, Lela! It is a much more intense job than being a parent of a neurotypical child. I really notice the difference when Cece is at school and it’s just Glenna and I. I am able to relax and not be on constant watch because I am able to trust Glenna to play quietly and not get into mischief or try to run off. 😀 I am very thankful that Cece and I are going to start getting more help. I expect great things to come of this. I’ll talk more about what’s going on in part 2 maybe even have to go into part 3 or 4 to get caught up! 😀 Thanks again, Lela!

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