Thursday, March 16, 2017

He may be your client...

But he's my kid.

You see a name on a folder. I see my heart walking outside of my body.

Since November we have been working with a state agency called Perform Care. It was recommended to use by our school district caseworker.  She sung the praises of how much it would help. I eyed her over my glasses because I knew she had no idea how all this stuff works.  Suuuuuure. It would be just that simple.

Here it is, middle of March.  Ask me if a Behavior Therapist has been to my house yet? Better yet, ask me if the caseworker assigned to my Kiddo has EVEN MET the Kiddo?

Yesterday I got to the point of autism parenting that breaks me.  Being so frustrated that I cried while I was speaking. If you get me to that point, your ass better run. I can blow off anger. I can shake off being sad.  Making my mascara run down my face because I am trying to get the therapy my Kiddo needs, I hope you have your affairs in order and have made peace with your maker.

I am so freaking tired of this dance.  The amount of bureaucratic nonsense is astounding. To all the school caseworkers and teachers in New Jersey that say "Call Perform Care" to the parents of the students they serve, I'd like you to know that it's close to pointless to suggest it like it's a solution that will end the problem. The only thing Perform Care has done so far is make me have dozens of meetings and hundreds of phone calls. It is a glorified run around of paper pushing.  Every meeting ends with whatever person this caseworker has sent du jour recommending another thing and whatever that thing is, they don't do. "But call your caseworker!"

I lost my ever loving shit yesterday. All over the phone to multiple people. I keep hearing from them how they serve the whole family and yet the only person in my family that sees or talks to them the most is me.  I didn't sign up for Perform Care. I signed my KIDDO up for it.

And here we are, all these months later, and he still hasn't been seen by a behavior therapist. Each phone call to make another appointment to discuss things means another week is added on to this.  I'm ready to throw in the towel completely with this agency because it's just a lot aggravation with no payoff.

Of course, I can't because I need to have my son in the system. In as many places in the system as we can get him.  So as much as I just want to throw up the white flag and both my middle fingers at this, I press on.

By the end of the day yesterday I had managed to schedule yet another meeting with another agency to come see my Kiddo and maybe they'll be able to offer him services.  I'm not holding my breath and I'm pretty sure in the Kiddo's file is a big note that the mother is a raving lunatic.

I'm okay with that. :-)

Get frustrated. Cry. Scream. Repeat. 


  1. 1. The irony of their name.
    2. I'm curious to know how many like-minded parents are in your readership, and maybe float a copy of this post, and dates of contact with them to the powers-that-be... I've worked on the other side of things for an agency, and it truly is astounding what the squeaky wheels get done for their kids.
    3. Your kiddo is lucky to have you fighting the good fight.

  2. 10 yrs and waiting. if you have any kind of money (widow here but own home) and I still get no help. My friend has a son with awful behaviors and they came a few times and told her to call her own insurance like they told me. Good luck! I have it on my calendar to call every May to keep him in the system *used to be DDD just became Performcare recently). I figure when he turns 21 he'll need the paper trail for DDS

  3. You are awesome, it gives the rest of us hope to keep fighting the good fight for our babies. You let us know we are not alone.

  4. I have seen this over and over again for years. It's very frustrating! The system stinks! Don't give up! Having a note in the file saying Mom is a lunatic will help! Also, mentioning in general" I sought legal advice with so and so..." helps too. Keep up the good work!

  5. BTDT, only thankfully it only took 4 months. 4 months when 3 of them could have been spent receiving services but no. Had to have insurance lined up for 2017 first. WT ever loving F?? Finally getting services. If you lived here, I'd refer you to who we use, because although they were slow to start, they did start. I wish you luck and will send you any sanity vibes I can spare (sorry it isn't much).

  6. Being another NJ resident and counselor versed in the Perform Care System, the truth is, there's such a need for therapists yet not enough individuals assigned to cases. Still, The fact that you've had to wait months for services to begin for your son is horrible. I would contact the state and continue to complain. It shouldn't take months for services to begin. Also, and I know each person is different, but if you have private insurance, maybe consider going through that route (I am sure you already have by now). I personally am not a fan of Perform Care for the reasons you've stated. Your son needs the help, not you at this point. Best of luck with everything.

  7. It is disgusting how long you have had to wait. It all boils down to is us proving to them this is a need. Oh no it is not a need. I just felt like calling one day on a whim while I watched a laptop whiz by and hit my wall. Stuff like that comes out of nowhere at times with little to no warning. I have tried everything to prevent it but FINALLY after months we got the ABA. I don't care what folks say about them these people have changed our lives. The two we have here have grown in leaps and bounds. We had to jump through hoops of fire and tears as well and I wish you an end to this journey and a beginning of another. Has a doctor recommended behavior therapy? I ask because sometimes that helps get the wheels moving faster!

  8. My heart breaks for you hearing this. Not only as an autism mom, but as an employee of a mental health service provider that coordinates behavioral services. I am fortunate to have consistently experienced when things go well, and it saddens me that others have experiences such as yours. Systems need to figure out how to serve these children because it behooves us all on a societal, as well as generational, level. I know you don't need me to tell you to keep fighting- I have no doubt you will! peace and love, sister!

  9. Our lives are hard enough without this stuff on top of it.

  10. I am from NJ too, and I tried Perform care as well. I had one case worker tell me that the only way to get any type of help was to ask for the crisis help. You would get help in 48 hrs and would offer up to 2 months of weekly therapies. I told her that I wasn't in crisis and I was uncomfortable calling in asking for that. She then told me, well give up now, you'll never get anything then.

    1. That is horrific. And I wonder if that conversation was even ethical on the caseworker's end.

  11. You have so many followers. I wonder if there are enough in NJ to take some kind of legal action to make changes. Be the screeching, clunky, loud wheel.

  12. Oh yeah. Had the same thing here in NY with aba agencies. so many mountains of papers, so many phone consults. BCBA coming down and keeping us occupied for 2 hours with her 'eval', while sonny boy destroyed the house bc I was busy sitting and answering her questions. Then the bcba came up with a completely unrealistic plan of behavior therapy which made me very upset. and then they NEVER WERE ABLE TO FIND A WORKER TO ACTUALLY DO THE ABA.
    Meanwhile they billed the state THOUSANDS OF DOLLARS for the eval.
    And had the nerve to ask for a copay!!!!!!!!!!

  13. My mom and dad have been fighing for years, we are just now gettting answers and even more questions