Thursday, August 26, 2010

TEFRA, some day

I sent in the application for MA through TEFRA on February 17th. I am impressed with myself as I copied the application and wrote the date it was mailed on top of it - are you impressed?

Anyway, we are still waiting. The phone system says it takes up to 30 days to determine eligibility. We are going on over 6 months. First, we had to schedule a physical as you have to have one done within 3 months of application, for the SMRT (State Medical Review Team) to determine if the child is "disabled". It took awhile to get the appt, and then a little while for the clinic to get the notes dictated and faxed in.

Then I received a letter that they wanted a neuro-psych evaluation. She had one done which I had already sent in. I resent it, and called. They said that was good. In the mean time, I had scheduled an appt for a neuro-psych evaluation as I did not trust them. Then over a month later I received another letter requesting a neuro-psych eval. I called, they said it probably meant they wanted a more recent neuro-psych eval (old one was 2 1/2 years old). We saw the Neuro-Psych Dr in the end of May. I harassed her for over a month to complete the report ASAP.

She got it sent in in mid June. Three weeks ago, on August 4th, I received the good news from the SMRT that they determined that Akila is "disabled". The SMRT sends the same letter to Hennepin County so I have been waiting to hear from them. I have called their automated phone system a few times and they don't show that they have received the letter. I was told that when they receive something in the mail or by fax, it can take up to 7-10 days before the social workers see it as the front desk staff have to scan everything. Brilliant.

I called yesterday. They have not received the SMRT letter (yeah, right). I faxed it last night. I received an email from the Family Coordinator at Children's Hospital and Clinics last week asking families about legislative things we were concerned about. I brought up the TEFRA process and how wasteful of state and family money, as well as state and family time it is. Do they think that the FASD went away, is that why they need a current neuro-psych eval? Is that why they want a physical dated within 3 months? Some families had one 4 months ago, and had to schedule a new one. We were due thankfully. I can understand it if the disability were something that is curable, or something a child could outgrow. But FASD and Turner Syndrome are permanent. What a huge waste of tax dollars, and time!!!!!

People, all I want is a PCA. Please. Twice a week even would bring great relief to our family, and to me personally.


Kari said...

The systems can be so frustrating to navigate and with FASD we end up having to navigate ALL of them. I find the people in the systems to be wonderful and supportive but the tangled web they are all working in is the problem!

Good luck, friend. Hang in there!

GB's Mom said...

I am watching carefully- I may have to go there.

dorothy said...

Darn. Does it help at all if I say that MN system looks positivly MODERN and efficient compared to what I am looking at in CO?

the johnson crew said...

i am praying it all works out for you to get on ma and get a pca soon.

do you know who you want to use for your pca? or are you just going to use a random person from an agency? the pca agency we used paid pretty well, if you want i can find that number