How do you feel when someone says they cannot help your child – after you’ve asked for help and have no where else to turn?
I felt like I was kicked in the stomach.
Last night, we had Ava’s Individualized Family Service Plan (IFSP) review. My service coordinator, employed by an agency hired by the state along with Ava’s team leader, who is employed by a different agency, attended. We went through Ava’s progress and noted how she was or was not progressing in certain areas. At the conclusion of the meeting, I asked for more hours of ABA therapy.
Ava currently receives 15 hours of Applied Behavioral Analysis therapy. It is recommended by many experts and doctors that she receive 25 – 30 hours of treatment at this critical age. I wanted 5 more hours to make it to 20 hours. My service coordinator tried to convince me that an increase in hours was not necessary. I should not listen to the experts. I work with her at home too and that is enough.
Then she said. “We cannot help you.”
I started crying. I could not help it. All I heard was that they were abandoning my child and her journey to recovery. I knew my husband would be upset. I felt like I was so tired (I had been up since 4am) that I had no energy to yell, scream or throw a tantrum. I was defeated.
I was not asking for the world. I was asking for a few more hours. I pay my taxes. I’ve been a good citizen. I do not milk the state for what it is worth. I’ve only been on unemployment once in my life in 1994 after I lost my job at a non profit for budget cuts. Unfortunately autism treatment is not readily available. Even in NJ, where health insurance coverage is mandated, you STILL have to pay a co-pay for each session. Five hours would cost us an extra $200 a week. We do not have that right now. I wish I did. I wish treatment for my child was more affordable and easy to get.
My service coordinator must have felt bad and gave me 3 hours. I understand she is under the gun. I understand the state does not have the resources. It should. Autism is epidemic. But I understand she cannot give out hours at her leisure. I know her agency is scrutinized.
But as a mother, what can I do? Say, OK, it’s fine. My daughter may not be able to tie her shoe when she is 15 because she did not get the proper services now, but it is OK. My daughter may never call me “Mama”, but that’s OK. I think about all the waste and the people sucking the system dry and I get so upset. Yes, Charlie and I are not paupers. But we live check to check. We are not extravagant. Things are not so important to us. The economy is not so great that Charlie can make a lot of money right now. And I can’t go back to work because I cannot cover the cost of daycare and coordinate Ava’s therapy.
So I am numb today. It is a dreary day outside – cold, bleak, raining. I know I got something for Ava, even though it is not enough. But I will continue to try.
What has your experience been with IFSP’s?