
Hypotonia, responsible for so many issues affecting speech and eating issues....
Kara needs feeding therapy, which is why mommy really wanted to get her into
DDD services as soon as possible, they have an awesome therapist who could evaluate Kara, who still refuses to chew anything and who is choking on anything that is not mashed. Sandra from
DDD, a wonderful woman and someone I respect, called yesterday and told me to try our medical insurance for it for now, prayers would be appreciated for approval. The insurance company is not receptive or kind about doing the right thing. We have had
CIGNA, United Health Care, Pacific Care, Health Net, and a few others,
Aetna has been the worse insurance company I have had to deal with in 12 years, they say no first, and then make you fill out claims forms to get approvals. They have a bureaucracy that is demoralizing, I was on the phone with them this week speaking to their prescription rep, and I left the call in frustrated tears, do you ever feel like you speak and folks hear blah blah blah. I am so sorry our school district ever signed on with them and cannot wait until we are with another insurance company.
I have figured it out though, I believe I have completely forgotten how to communicate with adults, and especially adults working in school districts and with medical insurance companies, maybe I spend too much time with children now?
So to recap what I was upset about Wednesday; I tried telling the Child Find folks that until we had their reports on Kara's cognitive and motor development, she could not get
DDD services. You see, having Down syndrome does not automatically qualify Kara for Developmental Disability Division services. She has to have screening to show she is delayed, the occupational therapist, speech therapist, physical therapist, and the psychiatrist all need to test Kara. They then write reports that I take and copy and send to
DDD. Kara is delayed enough to qualify, at 3 she does not walk, talk, is not potty trained, and she is very much like an infant in many ways, but we are talking about a system with procedures, and each one has a specific step before you can move to the next one.
The school says it is not their responsibility to let
DDD know Kara has delays, no one told the school it was, I simply said I need their reports for
DDD in order to determine eligibility. Since Kara is over the age of three, she is too old for early intervention services. If she was under three when we brought her home, things would have been much easier. The issue is; there are hundreds of children with speech delays, and autism spectrum, preemies, etc who also need to be screened, who are aging out of early intervention programs. The school is overwhelmed with these evaluations, and we have to take a number and wait our turn.
I am OK with this, what I am not OK with is defensiveness from the school district because mama is upset her daughter has to wait until June 3rd to finally get these evaluations. That they deny they have anything to do with the process of getting Kara
DDD services, sure, it is up to the school to provide OT, PT, and ST now, but
DDD can also supplement these as well as offer services such as water therapy, music therapy, feeding therapies, we need to apply for and be screened for the state medical plan, and
SSI. Without the school evaluations, we have to wait for these, and it will not happen immediately after Child Find determines Kara's strengths and weaknesses either, because there are many children who also need
DDD services and programs, and the state does not like approving children for
ALTCCS, in fact, they denied Meghan the first time.
Everything is a process, and the process takes time. Am I impatient? I think I am about middle of the road on patience quotient. This process though has already taken 4 months. It began with Kara's Ukrainian passport and her Visa going to the Ukrainian consulate, and waiting for that to be sent back meant we had to wait to get the birth certificate, which meant we had to wait to get the SS card which meant we had to wait for intake for
DDD. So, it is not just the wait for the school district that has me impatient, it is all the waiting in this process in the first place. Oh, and if you are internationally adopting a child with special needs and are from Arizona, you do not need to wait for the social security card to begin the
DDD intake, I didn't know that one. Now I do, I won't make the same mistake for Amanda.
What I do like about this, is that I am learning something that may help another parent down the road, and if I can make it easier for them, then this is worth it.