**THROWBACK POST**

April 2021

(Photo from Pexels)

It’s been an intense week of advocating, buffered with attending two Zoom poetry readings, getting my first vaccine shot, and April date day with Lillian. The poetry readings were great fun, and our date day was beautiful!

Read on if you’re interested in some venting about insurance and advocating. Otherwise, hope you’re having a GREAT Saturday!

What I would like to know …

Why provide medicaid to folks if barely anyone takes it? (Also, looking at why they don’t take it, very poor reimbursement as opposed to other insurance, way too many hoops to jump through, many of them being repetitive, and need to have a staff of 2 or 3 completely dedicated to dealing with medicaid.)

Why forbid people who have this worthless insurance from getting their own insurance, which I quality for, but the insurance agent cannot proceed (due to us having this worthless insurance), as she and I will get fined?

Why forbid people who have this worthless insurance from self-paying providers who don’t take this worthless insurance? (I have a specialist who is seeing me for free because I cannot pay her as she risks going against the rules, and I risk losing this worthless insurance. I was willing to pay her, but she cannot accept it. She is signing up to take this worthless insurance, but it is going to take a FULL YEAR to process.)

I just received a dermatologist referral for Thomas. We live in Reno. This referral is for Las Vegas, EIGHT hours south of here. I had already found someone here, but it was going to be a hassle with two appointments required. However, since the place in Vegas offers tele-health, we will go ahead with them. I’ll keep the other appointment for now, as we see how the Vegas place goes. (March 2022 Update: By the time I called to schedule for his third follow-up they had discontinued tele-health visits. So we just had to wing it with the knowing how to proceed.)

Also from Thomas’s and (used to be) Lillian’s pediatrician’s office: Referrals to places I do not want to use. I’ve been doing this for 19 years, I can pretty much tell if something is going to be a good fit. I spend weeks emailing and calling specialists, therapists, and doctors to find someone who takes the worthless insurance and who doesn’t have a two year waiting period.

Also, learning two weeks ago that Lillian’s pediatrician will no longer be her doctor. In the middle of a pandemic. I’ve got to find a new doctor, skilled at working with special needs folks, and once finding this person, educate them about Lillian. In the middle of a pandemic. Why couldn’t the office have sent something reminding me that Lillian’s time there was coming to an end? Why won’t they help us transition?

Remember in December when I was searching for a therapist and a psychologist (for Autism and IQ testing) for Thomas? Thomas has had two sessions with the therapist I found, and he likes her (had to wait two months for an opening.) This person is not where his doctor’s office was referring us. I found her on my own by calling and emailing folks from a google search. He has the Autism screening in August with another person I found – not where the pediatrician’s office referred us. I found her on my own).

I had put Thomas on another waiting list for both of these items. I phoned there yesterday to see if Lillian could take his slots on the waiting list, as these need addressed with her also. Success! (Actually, the person I spoke with in December is no longer there, and failed to put Thomas on the list. I spoke with the office manager and she added Lillian where Thomas would have been on the list.) Updated Note: Before Lillian left her pediatrician, they referred us to a neuropsychologist in Las Vegas. This is a 4 day appointment! Just nuts!

Thank you to my contact at the Nevada Governor’s Council on Developmental Disabilities for letting me share these frustrations with her, passing contact information to me, and just being there for me to vent, at times feeling sorry for myself.

Thank you to her also as I needed to know how I can get Lillian vaccinated without her wearing a mask. We are talking about someone who has an intellectual disability who you cannot reason with, who is not rational about the importance of mask wearing. Thomas and I have worn masks this entire time, and have not gone inside anyplace, other than the grocery store, and to pick up to-go food from restaurants. Lillian has not been inside a place for over a year and a half. Lillian’s “not” pediatrician’s office was no help, and SRC (Sierra Regional Center) was no help. I now have a name and contact number for when Lillian is ready.

I’ve joined a local special needs parenting facebook group in order to share and get feedback. Just did that Friday, and am taking the weekend off from advocating! Back at it next week.

March 2022 Update: Nearly a year later. Thomas and Lillian have both had a neuropsychological evaluation. I’m scheduled for an evaluation in October 2022 with the same person who did Thomas’s evaluation. I’m now searching for a pediatric psychiatrist that takes Medicaid (oh, joy!!).

We gave up on a local dermatologist for Thomas, and will revisit in the future if need be. Lillian has a new doctor that I found on my own, without going through Medicaid. I switched to her, also. Thomas may switch to her, too. 

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here. 

Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.