I have been making some good progress with social services. It took us over a week to straighten out our phone line problem (something was crossed in the wall, only giving out a busy signal. The phone company was going to charge us an arm and a leg to fix it, so my dad came and fixed it in a few minutes). I had to call all of the offices and social workers to make sure they had my cell phone number and e-mail.
- Social Security is in progress. The agent started off very rude, but as she began to hear all of Scarlett's medications, hospitalizations and issues, she softened and made sure we had everything set to be approved as soon as possible.
- The Medi-Cal (California state medical insurance) office was not a place I would want to spend much time, but the social worker there was very nice, and also promised to get things in motion as soon as possible.
- California Children's Services (CCS) had the gall to deny our claim last week; their reason: her medical records did not describe a neurological condition that qualified for services. Their doctor deemed her delays as minor and only related to being hospitalized so much; this without ever seeing her. After leaving messages on every voice mail I could access, I finally got a call back from a supervisor who explained they needed more documentation...so I have since inundated them with documentation. A letter from her doctor stating that "Scarlett has ongoing neurologic problems originating from a massive congenital brain tumor" and "it is clear that these are neurologic in origin and in fact she does meet all criteria"(ha!)...physical therapy, occupational therapy and speech evaluations...a chart of every single hospitalization and appointment she has had since diagnosis in December. After all of this, they are still requiring more, so we will continue to battle this.
- We finally were able to make an appointment for evaluation with the Early Start regional center...in August. I called them May 22. They can't see her until August because their doctor is on vacation. Apparently there is only one doctor to evaluate all the kids with developmental delays in our entire county of over 1 million residents...and I have a feeling this is not a doctor familiar with "massive congenital brain tumors".
- I have yet to hear back from the school district about hearing. From my experience, they have a limited amount of time to respond, so I think I will have to call and remind them of this.
Thank you to everyone who offered their experience and advice with this last week. I have learned a lot already, and will share some tips in a future post that I hope will help others in the future.
That's what I have accomplished this week, in addition to an additional surprise platelet transfusion for Scarlett, new hearing aids (more on that later!) and her first therapy appointments, as well as getting my flat tire fixed, wheels balanced and ordering a windshield repair (rocks on the freeway on the way to therapy). I feel like a telemarketer, making call after call to people who are not entirely happy to hear from me. However, I took a few minutes to make some homemade ice cream this afternoon, so I feel a little better - ice cream fixes most everything!
This week's request: does anyone have any information on hosting a blood drive? Say, in honor of a child with cancer who has has been transfused with more than her share? Email firstname.lastname@example.org if you know how we might go about doing this.
If CCS needs any more documentation regarding sweet Scarlett and her needs, I am sure that any one of us 1,700+ followers would be happy to leave them some voicemails. That would get their further attention for sure! LOL
That is quite a bit to accomplish in one week! Good for you! I am excited to hear about Scarlett's hearing aids!
I'm sorry, I have no info about hosting a blood drive. I am sure someone will though. :)
I have no info on hosting a blood drive sorry. I have actually never donated blood before, but if I could for Scarlett I would in a heart beat!
I still cannot get over how healthy Scarlett looks in the forth of July pictures. She is amazing.
Love always - Christina and Kaitlyn
Give em heck mama! You are doing a great job, hang in there! I can not believe that they are dragging you through all the red tape. Seems like a no brainer to me. If it were up to me I would approve you for whatever you needed! HUGS! :)
Some days I feel like I LIVE on the phone, it looks like we now have a new medicaid case manager since P has been switched over to long-term care medicaid. Which may not be a bad thing, considering her last one didn't even know what that was!
You sound like you're getting the hang of it & I love desk doctor's who think they get to control kids lives.
If you would like to host a blood drive I would contact your local blood donation center. They are usually more than willing to arrange a blood drive. Especially in the summer time when supplies are low to begin with.
I hope that you are able to get everything sorted out soon for services for her. Remember the squeaky wheel gets the grease.
Doesn't look like my comment made it to you yesterday (?). If you would like to host a blood drive check out this link:
My suggestion is to ask the hospital who they use for blood products and then contact that group. Some groups don't charge you for blood products if an equal number of units have been donated by your or in your name. I.E. My grandmother received 1 or 2 units, and once that many units were donated in her name, the OBI didn't charge her for the blood she received (they charge for the processing, etc).
What blood type is lil scarlett? Just wondering.
Scarlett is A+. Unfortunately, neither Chris nor I are the same (A- and B+) so we cant directly donate for her. My sister is the only other A+ in the family, but you can't donate when pregnant. However, since there is always a shortage of blood products, we are looking into how to help.
If you haven't yet, I would also look into WIC (Women, Infant, and Children) as they will help lower income families get the nutritional requirements of their children met. They helped my family when my daughter needed supplemental formula (Nutren) due to low weight by covering her entire supply, plus the other foods in the package. Might be worth checking out, especially if Scarlett is needing prescription formulas due to her feeding tube.
Brandi, try contacting the Stanford Blood Center. They even have a "blood mobile" they can take out for onsite donations. I'd be happy to donate at a drive for her!
I am SO SORRY you are experiencing such frustration with these services. Isn't it ironic that the people that are supposed to help you are the ones that don't want to? CRAZY! Keep pushing!! Prayers as always from Iowa...
I just discovered your blog and am keeping you and Scarlett in my thoughts and prayers. I teach deaf/hard of hearing students between the ages of 4 and 21 in St. Paul, Minnesota. You are right, your school district has a limited amount of time (30 days in most states) to respond to you. Make sure you contact Early Childhood Intervention Services at your local school district and demand that Scarlett be evaluated for D/HH (deaf/hard of hearing) services (and any other services that may be necessary). I am 100% certain that Scarlett will qualify for these services, since she's already wearing hearing aids. If you're having any trouble at all, contact your state's department of education. Good luck with this!
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