I quickly got tired of sitting around feeling like there were no options, nothing I could do. So I wrote an email to my state legislators, Rep. Dan Saddler and Sen. Fred Dyson. Here is the e-mail:
Dear Sir,
My name
is A. My daughter the Cat was diagnosed with Asperger Syndrome in September of 2012. It was a long road
getting the diagnosis and it has been a longer road trying to get her the
services she needs in order to make progress. Cat would benefit greatly
from intensive Applied Behavioral Analysis (ABA), in home support and care,
home modifications, and respite care.
The Cat started struggling with her behaviors at home and in school during 2nd grade in
2011. We tried many things to help manage her behaviors including the Anchorage School District’s Creating Successful Futures program. Ultimately we received a
referral for neuropsychological testing which gave us her diagnosis. Since then the Cat's behaviors have continued to escalate, affecting her at school, her
development, and her quality of life.
She has a history of self-harm. My parents and I spend most of our time
walking on eggshells trying not to trigger a meltdown. Screaming, throwing
things, hitting, spitting, choking herself were almost daily occurrences. Because of these violent blow outs, The Cat could not be in an after school child care program and I have been unable to
work for the past 2 years living on public assistance and social security.
After
receiving her diagnosis I met with staff at FOCUS, Inc. and began the process
of applying for the Medicaid waiver, with the first step of gaining
Developmental Disability Eligibility.The Cat was denied, because at this
point I did not have enough supporting documentation to display her
developmental deficits.
In the
almost 2 years since receiving her diagnosis, I have enrolled the Cat in
physical therapy (PT), occupational therapy (OT), and speech therapy (SLP). I
have received a copy of the neuropsychological evaluation completed by Dr. F, I got copies of all the records from all of the evaluations I
had done, and applied again. The Cat was denied for the second time, claiming
she did not meet the criteria and was not delayed enough in enough areas.
In
October the Cat’s behaviors and challenges became so severe that even with
medication I had to have her admitted to North Star Hospital for inpatient
treatment. I am the only one currently providing care for my daughter and I am
suffering from burn out.
Asperger’s
has presented the Cat with many difficulties. She cannot bathe herself
without step by step direction and help to rinse her hair. She cannot brush her
own teeth. These are a result of a lack of executive planning function in her
brain and general low muscle tone. The Cat cannot tie her shoes, button her
blouses, or brush her own hair. All of these are fine motor issues. She is
unaware of potential dangers around her and will walk right out into traffic. Still
the Division of Senior and Disability Services say she is not developmentally
delayed enough. I am watching my daughter slowly slip further behind her
typically developing peers.
I have applied and been denied a total for 4
times for DD eligibility. We are told repeatedly that the Cat is not delayed
enough in enough areas to qualify. The organizations helping me to apply tell
me to wait 3-4 more years, because the differences will be more apparent. I
cannot sit and watch my child slip away for another 4 years without doing all I
can to help.
With ABA
and other services, the Cat could learn to cope with her meltdowns, learn
more acceptable replacement behaviors, and how to care for herself. In home
care and services would allow me to go off of public assistance, go back to
work, and the Cat would not have needed in-patient treatment, saving money
all around. The cost of 1 year of public assistance benefits and residential
treatment versus 1 year of ABA is nearly double ($65,758 vs $37,576. $720/m
ATAP, $438/m FS, $258/m SSI, $48,766 North Star 1 year. 671 annual hrs. @ $56
an hour) (personal benefits, Autism Speaks write up AK SB 74 passed 2012).
I know that my daughter has a chance to become a fully
functioning member of society with the proper supports and interventions now.
Research and best practices all support that early intervention is vital when
working with children on the Autism Spectrum.
I am hoping that you will be able to offer me some
assistance in gaining the DD eligibility, and the Medicaid Waiver, so that I
will be able to once again become self-sufficient, supporting myself and my
daughter.
Thank you for any help and advice you might be able to
provide in this matter.
Sincerely,
A
***Names changed to protect anonymity
Today I heard back from one of Rep. Dan Saddler's aides. She gave me a lot of information and I am working on a second post to disclose that information. The point here is to let you know that you do have options, please do not give up.
Talk to y'all later.
