Termination of Funding?!

There is a bill in the Arizona State Legislature right now called SB1519 and it proposes to cut AHCCCS (which stands for Arizona Health Care Cost Containment System), which is basically our state's version of Medicaid. AHCCCS also provides Sadie and our family with cost assistance on therapy, equipment, respite, and medical bills. Cutting AHCCCS would devastate our family's financial situation, and that of many others.

The argument is that AHCCCS is not working the way it should. Cutting the program would balance our budget in Arizona...but money isn't everything. The negative impact of this bill would FAR outweigh the positive, in my opinion. Not only would this cut funding for many developmentally disabled and medically fragile people in our state, but it would also effect healthcare providers who depend on that funding to receive payment from their patients. This bill has the potential to put who hospitals out of business.

So, what can YOU do about it?

I've written a letter and I've emailed it to my legislator. You are welcome to take this letter and adapt it to your own situation if you are living in Arizona and this bill effects you. If you are not in Arizona, or you are, but this bill does NOT effect you personally, I would invite you to copy this letter, adapt it a little and send it in for Sadie. Especially if you are in the state of Arizona. The louder we yell, the better chance we have to be heard, and we need to be Sadie's voice for her until she is able to speak for herself.

There is a website where you can copy and paste this letter and it will be emailed directly to your legislator, then you can also print off a copy and send it through the mail. If you are not in Arizona, I'm sure any Arizona address will work, but if you have our address, please use that one. Here is the link.

And here is the letter:

Honorable,

I’m writing you about bill SB1519 proposing that Arizona eliminates AHCCCS and withdraws from Federal funding for Medicaid. As you know, AHCCCS provides over 90% of the funding for DDD (Division of Developmental Disabilities). My daughter, Sadie Mae, would be severely impacted by these cuts. After a completely healthy pregnancy, I delivered a sick baby who wasn’t breathing on January 19, 2010. She had been attacked by the neuro-toxins from the Group B Strep virus and it left her severely brain damaged. Hypoxia at birth only compounded and accelerated the damage. She was put on brain cooling in the Phoenix Children’s Hospital NICU, a new procedure done with newborns who suffer from hypoxic ischemic encephalopathy, and I believe that this procedure saved her life. After being told that she would never even be able to breathe on her own, we decided to remove her breathing tube and ask that the hospital staff do not resuscitate. Miraculously, Sadie lived, but now she faces life with significant developmental disabilities.

Sadie’s major diagnoses are the following:

· Cerebral Palsy – with hypotonia in her limps, and distonia in her trunk

· Cortical Visual Impairment (visual impairment related to how the brain processes, not related to the eyes themselves)

· Microcephaly – due to the damage in her brain, her occipital lobe did not develop therefore failing to expand her skull and leaving her with a smaller-than-average head.

· Insomnia – due to the lack of seratonin her brain makes, she doesn’t sleep

· GERD – spasticity of her muscles causes Sadie to reflux several times a day after eating

Sadie also does not like riding in the car, which makes it very difficult for us to go anywhere as a family, or for me to get anything done during the day. She is nonverbal, and her limited ability to control her muscles makes it hard for Sadie to communicate what she needs. Sadie also processes pain differently than you or I and it’s very hard for her to understand teething, reflux, or growing pains. She has a very hard time acclimating to a new situation and becomes very irritable and inconsolable, we hesitate to take her anywhere or introduce her to any new environment. Because of her sensitivity she also will only nap while being held.

Cutting AHCCCS (and funding for DDD) would not only impact my family, it would also impact all those working to support my family. Sadie receives the following services through DDD and Arizona Long Term Care (AHCCCS). If we were to lose services the following people would also be financially impacted and possibly lose their jobs:

1. Sheila L., Vision Therapist-Foundation for Blind Children

2. Jessica D.., Occupational Therapist- Arcadia Therapy Services

3. Tami H., Physical Therapist-Kidability

4. Melissa L., Music Therapist, Neurological Music Therapies of Southern Arizona

5. Nancy P., Speech Therapist, Family Partners

6. Zahira R., Respite Provider, CASS

Sadie also sees the following doctors: ophthalmologist, neurologist, orthopedic doctor, GI doctor, and primary care doctor.

In order to progress physically and cognitively Sadie needs these services. In order for my family to continue to be hopeful for the future and for my marriage to stay strong we need these services. In order for our economy to improve we need to keep these service jobs available to therapists, respite, and habilitation workers, etc.

To deny young minds the chance to thrive will cost us as citizens for the rest of our lives. To nurture and help them match their wonderful intellect with their bodies creates individuals that can go on and be productive.

We all understand that we need to find ways to change and correct certain aspects in the government. To just strip and take away vital services and destroy families cannot be a solution to our problems.

Sincerely,

Here are some more links about this bill (and you are welcome to do your own google research!):

The actual bill if you want to read the exact wording

Here's an attorney's opinion

Here's an opinion from a news blog

We appreciate any help you give in this matter as it is very important and directly effects our family.

Thank you.

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.