Thanksgiving Day 4

Last night, Brian gave me a scare. He called me from El Paso to tell me that he would get a call today letting him know how a restructuring in the company would effect his position. He was told that everyone would have a job, but some may be demoted or relocated, and some positions may have different responsibilities than they did before. He was worried that he'd be asked to relocate to Las Vegas, because there are 5 or 6 people that are here in Phoenix... only 1 person works in Las Vegas. All evening we texted back and forth fretting about what kind of news he was going to get today, and it came down to me saying that if he was asked to work in Las Vegas, he'd have to commute. I can't leave Phoenix, not now, not after I've worked so hard to establish all these fantastic resources here for Sadie (and me) and our family.

To start with, we have an AWESOME pediatrician. We attended a conference at Phoenix Children's Hospital a couple of weeks ago, specifically about cerebral palsy, and our pediatrician (Dr. Wendy) spoke about primary care. Her focus was on coordination of care, like being at the head of everything and managing all the appointments with specialists, prescriptions that are written, and changes that are made in the management of care. When the question and answer portion of the morning came, people raised their hands and asked her, "how do we get our pediatrician to do that???" I didn't realize that other doctors DON'T do that. We've always had Wendy and Wendy's always been our contact person for everything. I can email Wendy anytime of day and she is always good about getting back to me within hours...even if it's a Sunday or she's on vacation. When I needed to change something for Sadie regarding GI, I contacted Wendy because contacting the GI doctor would mean leaving a message for the nurse who then would leave a message for the doctor and it could be an entire day before the nurse got back to me (if I was able to take the phone call) and then the answer probably wouldn't make sense because the doctor didn't understand the question. But Wendy was able to take care of the whole matter, including communicating with the GI doctor, within 48 hours. I've emailed her pictures of a rash or what I think might be an infection so she knows whether we need to come in or not, she calls prescription refills in to the pharmacy when I ask, and she gives me hugs (especially when I cry). I feel like she's more than my child's doctor, she is my friend, and Brian and I's partner in this business of raising a special needs child.

Sadie has 5 therapies a week. She sees a developmental vision therapist from Foundation for Blind Children on Tuesdays. Thursday mornings she has occupational therapy who works on sensory issues and spends a lot of time focusing on Sadie's hands (fists) and putting weight through her arms. Friday mornings Sadie has feeding/speech therapy. And Sadie sees the physical therapist twice a week on Wednesday and Friday mornings. When we got approved for these therapies, Annie, who works at the Dept of Developmental Disabilities (she's our coordinator from the state) sent me a list that was like 90 pages long. I weeded through that list for days, calling everyone I could to find therapists that were home-based. Sadie screamed in the car and it was unrealistic for us to go to therapy. But, we live in some kind of therapy black hole and many don't come to our specific neighborhood. We do travel to go to PT (which Annie told me we were lucky to even HAVE PT at Sadie's age), but everyone else comes to us, which makes my life so much easier (right, like my life is easy).

Our PT, Tami, doesn't come to our house, but she is worth driving to...and when we move, I plan to continue to make the 45+ minute drive to take Sadie to see her twice a week. Tami is not just a therapist, like Dr. Wendy, she is also a friend. She is a huge advocate for special needs children in our community, and she's like a "lending closet" and never hesitates to let us borrow something indefinitely. Tami is the one who introduced us to the Chill-Out Chair and let us borrow hers for like 6 months until we were able to get one of our own. And recently she gave us a high chair that someone donated to her because their kid had grown out of it. She is generous and kind and has such a positive outlook for Sadie's future. Tami gave me hope in the area of potty training. Tami keeps me positive about Sadie walking. Tami takes time out of her schedule to attend our other appointments like wheelchair fittings, and the spasticity clinic. Everybody knows Tami and everybody likes Tami and I feel lucky to have Tami in our lives. I would hate to have to leave her.

There are a number of amazing things we have access to just because we live in a big city with a very prominent children's hospital. There is The Foundation for Blind Children with all its resources and programs. There is United Cerebral Palsy, which has a childcare facility set up for special needs children. I'm hoping we can start taking Sadie after we move just so she can be around other kids a couple of days a week. We have a ballet company that includes all children, special needs and typical and puts on fabulous productions that use everyone no matter their ability (watch a video here). And there's the ADAPT Shop, which we're just learning about. The ADAPT Shop is through Southwest Human Development and provides low-tech solutions to those with physical challenges. We're hoping to get something called a Happy Chair through them soon. This is a chair that is built according to Sadie's size and needs that will support her where she needs it, but also encourage her to sit independently. I'm really excited to be taking part in this program.

Before we had kids, we discussed someday moving out of Phoenix, but things are different now, and you can see why it's beneficial for us to stay here. And these just scratch the surface. There are friends, other families, respite providers, events to attend, etc. Sure, things will change when we move across town. We'll have some different therapists and things, but I know enough people now to ask for referrals so that I don't have to wade through another huge long list of names of authorized agencies.

And in case you were wondering and waiting to hear what happened with Brian's job, he got the call and we're not moving to Las Vegas. His job changed a little, but as far as anything that effects me, or our family as a whole, everything's the same...only he'll probably be traveling less, which means he gets to be with us more often. So, we move forward with our plan to live here for the rest of our lives.

Arizona Long Term Care System

Once Sadie qualified for AZ'a Early Intervention Program, which got her services like Physical Therapy, Occupational Therapy, and Speech, the next step was to apply for Long Term Care (ALTCS). It was explained to me that acceptance into ALTCS was based on need, it is a point system. Based on Sadie's diagnoses, and her ability to do certain age-appropriate things or not, she would earn a certain amount of points. She had to reach 40 points in order to receive ALTCS care. We first applied when Sadie was 4 months, however, the screening wasn't done until 6 months (yay for how fast the government works). Even though Sadie could not roll or sit and she was barely smiling she was denied. Unfortunately, there were not points given or questions asked about if she screams in the car everytime we go somewhere or if she sleeps through the night therefore letting me sleep through the night. I almost apealed the decision, but my advocate (also called a support coordinator) told me we can just reapply...as many times as we want until we get in. She also told me the next list of skills was for 9 months, so we should start the process when Sadie is 8 months so that we'll be considered for the next skills set. And the more Sadie CAN'T do, the more points she'll get. We did what we were told and called around 8 months to get the ball rolling again. At this point we were desperate.

I bet you're wondering why ALTCS is so important and why we want to get into that system so badly. There are a number of reasons, actually.


1. Right now we are eligible for services through the Division of Developmental Disabilities (DDD) Early Intervention Program (AZEIP), which covers birth to 3 years old. This program gets us therapies. However, after recent legislation was passed, a program called "Family Cost Participation" was instated. Where therapies used to be 100% covered by the state, now we are required to pay a percentage of them based on our income. Starting in November, we were told we were responsible for 35% of the cost of therapies. This is after insurance is billed. As you can imagine, having 3+ therapies a week, this can get pretty pricey. So, for the month of December I've lessened Sadie's therapies. This Family Cost Participation also applies to any equipment recommended or needed for therapies, which Sadie will eventually need. However, if you have ALTCS you are exempt, and the state completely picks up the tab.

2. Being enrolled in ALTCS includes state healthcare coverage. I have become very familiar with insurance billing in the last year as you can imagine, so this means that first our private insurance is billed, then the state provided health insurance pays the rest. This includes prescriptions, hospital services, triage, equipment, etc. As you can imagine, this is a HUGE financial burden lifted from families (like ours) who have a child who is going to need these kinds of services her entire life.

3. The state will provide and pay for 720 hours of respite a year. This is really the biggest reason we want ALTCS right now. This means that someone will come help me. As someone once told me, it's basically glorified babysitting. Right now Sadie is NOT able to really go out and run errands with me. Although the car screaming is getting better, taking her to the store, the post office, whatever, just isn't practical. A couple weeks ago, we put her in the stroller and took her to Costco. She loves her stroller, so we didn't think it'd be a problem. I think it was visually too stimulating, and maybe the way the noise bounced off the walls...she was overstimulated pretty quickly and couldn't handle it. It's probably a similar situation for any store she enters. Having someone come over and watch Sadie for a couple hours just so I can get some work done, would be so helpful. I have even heard stories of respite workers even coming and helping with chores; vacuuming or cooking or laundry, things like that. In my imagination a respite caregiver must come with wings and a halo, because she would seem heaven-sent.

Even though we began the application process when Sadie was 8 months old, we just had her interview a couple of weeks ago. I was told to "encourage" Sadie to have a bad day when the person comes over. Don't clean the house. Look as stressed out as possible. And DON'T make Sadie look like she's doing great (even though in my mind, as her mother, she is!). The goal is to give this person a picture of a family who NEEDS to be in ALTCS. Sadie wasn't great when the lady came over. She needed a nap, and I explained that I'd been waiting for the lady to get there (she was a half hour late) because in order to nap, I had to be holding Sadie and if I was interrupted by the doorbell that would be bad. But by that time Sadie was beyond able to nap, she fell asleep for 2 minutes then woke up all happy. (I hate when she does that because it's so deceiving...it only lasts 20-30 minutes before she's horrible again) The lady asked me all the questions, and as I answered that Sadie can't do this and can't do that, she said, "is this the first time you've applied for ALTCS?" I told her no and that we were denied the first time. She was shocked.

We had a conversation about Sadie's diagnoses and how you don't grow out of CP or get cured of it. We talked about what CVI (cortical visual impairment) meant for Sadie's vision long term. And she couldn't believe we had to apply twice with those kinds of diagnoses. I also mentioned that Sadie is 10 months now, and she still can't do any of the things on the 6 month skill list they came out with before. She told me she will make sure we get approved this time around. yay!!

Just last week I got the calls telling me we've been approved and we're now in ALTCS! hooray! I even have a list of agencies to call for respite. My support coordinator immediately pushed through approval for 8 hours a week for respite so that we could get that ball rolling immediately when we return from Oregon. This news is such a relief for me and for our family, and I am excited to see where it takes us.

The STATE of things...

When we brought Sadie home, she was on hospice care because nobody thought she'd make it through the week. Her brain was mush, her kidneys (and liver?) weren't working properly, she couldn't suck or swallow, in fact we were told if we chose not to feed her that was okay. I still remember the nurse who came over that first day to do paperwork with us. She told us that what happens in cases like ours is that often the baby will aspirate liquid somehow and end up getting pneumonia. Then probably the pneumonia will continue to haunt Sadie's lungs and she'll end up dying of that. It was a pretty grim time...yet, to us at that point, it sounded good!

Obviously Sadie exceeded everyone's expectations and was "graduated" from hospice on April 2. We were then referred to, I believe, 2 state-run organizations: AZEIP and DDD. This is where it gets confusing...

Arizona Early Intervention Program (AZEIP) is who we saw first. A girl named Kara, who looked like she was 22 years old, came over and asked me a bunch of questions about Sadie. This happened on April 14. She wanted to hear Sadie's story (which gave her chills and made her get a little teary-eyed), asked me what my goals are for Sadie, what my concerns are, and had me sign a bunch of release forms so that they could access doctor's records. I also gave Kara a letter from Dr. Wendy (our pediatrician) stating that Sadie has been diagnosed with a seizure disorder and is currently taking medicine for these seizures. The reason I gave Kara this letter is because, having seizures makes Sadie automatically eligible for DDD (Division of Developmental Disabilities). What?! I know. I'll explain in a minute.

The next week, a lady named Lloydchell (yeah, I asked her to spell that for me!) came over and asked us a bunch more questions about Sadie's development. This was April 19. She was evaluating if Sadie has significant delays, or if she's right on. To be eligible for AZEIP you have to be significantly behind in developmental milestones in order to qualify. And if you do qualify, you're eligible to receive state-funded services for physical therapy, occupational therapy, speech, etc. Lloydchell said that the speech-pathologist needed to come out and also evaluate Sadie before they could make a final decision, but that according to her observations, Sadie was not delayed enough to be eligible. This is also what Dr. Wendy thought. But remember, Sadie has seizures, so she's automatically eligible for DDD. I promise, I'll explain what that means.

Jenny, the speech-pathologist came over April 29. She was a great lady, and actually had had a baby the same week Sadie was born! She found the same thing as Lloydchell, and told us again that Sadie would probably not be eligible for AZEIP's services. But it was encouraging to hear her compare Sadie to her own baby and talk about what her baby is and is not doing yet. It sounded like Sadie's pretty normal about all things speech...well, at 3 months old at least. I posed the question to Jenny that many of you are asking, "So, if Sadie isn't eligible for AZEIP, then what do her seizures make her eligible for?" Up until this point I was under the impression that AZEIP and DDD were the same, just AZEIP focused on kids 0-3 years old. Wrong. AZEIP and DDD are different, but every kid under 3 has to be evaluated by AZEIP before they can even get to DDD. Even though we have a letter stating that Sadie has seizures, AZEIP had to waste a bunch of time evaluation her development only to find that she's not delayed enough to qualify for services, which doesn't matter anyway because all along she's been eligible due to the seizures! And if you're keeping track, you'll realize that at this point it's been 2 weeks since we've seen Kara and 4 since we were exited from hospice.

So what happens now that we've seen Lloydchell and Jenny and been told by both of them (and Dr. Wendy, don't forget) that Sadie's development isn't delayed enough to qualify for services? They have to write up a report, give their findings to Kara, who then has to hand over the case to DDD...since Sadie is automatically eligible for their program. Why couldn't this just be done in the beginning? I don't know...seems like a waste of time doesn't it?

I called Kara when we returned from Oregon on May 17 (over a month from when she first came out). We had received a letter in the mail from Kara while we were gone telling us that "Lauren" didn't qualify for services from them, but because of her seizures, would be eligible through DDD. (I think Kara forgot to proofread her form letter...maybe she had a bunch to send out that day.) Kara told me that she had given everything to DDD that day and that we should be hearing from them by the end of the NEXT week (which was this last week that just ended). I didn't want to wait anymore, but it seems that this is how the wheel turns when dealing with the state, very very slowly. Meanwhile, Sadie has missed out on 6 week's worth of therapies she probably could have benefitted from.

I spoke with Kara Wednesday, she told me she had talked to our DDD coordinator that day (her name is Annie), and that we should hear from Lloydchell and/or Annie no later than Monday to schedule a time to come out. See, that's what's cool about hospice/AZEIP/DDD, they come to your home. We are also going to see a psychologist at PCH (Phoenix Children's Hospital) who will probably give us therapies through the hospital, but we have to GO to the hospital to do that...and you know how Sadie feels about the car! The next day Lloydchell called me!! I was thrilled. I really feel like these ladies want what's best for my child and my family, but their hands are tied by this bureaucracy of state-run programs. They understood that I'd been waiting a long time to get started with a program that I'd been told from the beginning my daughter was automatically eligible for, and they got the ball rolling as soon as they could do anything about it.

We're meeting with Lloydchell and Annie (the DDD coordinator, who apparently is our golden ticket in this program), June 3. I am really excited, let's get Sadie in some state-funded therapies (this means not having to deal with insurance companies!) and let's get her rolling, grabbing, and learning to suck on a bottle. And let's do it all in the comfort of my own home!

Stay tuned for more updates on Sadie's therapies and how DDD is working out for us.