I have learned something in the past 3 months.  I have to step up my advocacy game.

Brandon’s last year of school is next year.  What then?  What happens?  His teacher, therapists, and paras understand this.  They understand we have to start planning now.  Yes, we have 13 months and that seems like a long time.  However, before we know it, Brandon’s time at school will be completed.

I am having a more challenging time getting Brandon’s case manager and her team to recognize the time constraints we are under.  How do I get them to understand our concerns, our fears, and our hopes for our child?  How do I get them to listen to us?

Know your rights as parents.  Steve and I are Brandon’s legal guardians.  That was the first thing we did when he turned 18.  We also have to know what Brandon’s rights are.

Steve and I have to know what we want for Brandon.  Second, we have to make sure the case manager understands that our wishes are based on what WE think would be best for OUR son.  We have lived with him for awhile now and we really do know him best.  I have had to remind the new case manager more than once that she has only met my son one time.  She hasn’t been around him and she does not know him.

Having contact information for the case manager is important.  Brandon’s case manager was assigned at the beginning of February.  We did not get contact information until last week when I had to call the supervisor.  I didn’t even know her last name to be able to look it up.  Yes, I should have asked for that information immediately, but I was a bit shocked he was getting a new case manager.  It seemed to come out of nowhere.

I have found that knowing what the case manager is responsible for is really really critical to positive advocating.  Fortunately, I have 22 years experience and have a pretty good understanding of this.  Last week, I asked the case manager to forward me copies of some recent assessments that were completed for Brandon.  The case manager argued with me that she would not be able to do this as everything was an “internal document”.  I knew that was incorrect.  And yet she argued with me for ten minutes.  We left it with her asking her supervisor if she could do this and she would get back to me.  I received the assessments in the mail yesterday.

This case manager is also the one who has told me several times that I am “not allowed” (these were her actual words) to talk to any residential or day program providers until she tells me it is okay.  I also know this is incorrect.  I can talk to whoever I want about my son.  I wonder how many other parents she has told this who are unaware that she is 100% wrong.

I have spoken with the case manager’s direct supervisor more than once about some of these concerns.  The supervisor has not been receptive to listening to me.  I have found her and the case manager to be a bit cold and without empathy.  They have both told me that Brandon has to go the route they have decided on.  Remember….the case manager has met Brandon and I one time.  The supervisor has never met my son.  They haven’t talked with his teachers, his therapists, his paras, or his doctor.  When I suggested they do this, I was informed they know how to do their jobs.

I have reminded them that their job is to support Brandon with the direction and path HE wants to take, not the path THEY choose for him.

I have started my “Advocacy Notebook”.  I am keeping track of everything, including phone conversations.  I make note of questions I have asked and when I can expect an answer.  I do not expect anyone to get back to me immediately, but I do believe waiting 3 weeks for an answer is a bit excessive.  Remember, I had no contact information for the case manager.  The questions I asked are important.  The answers will help Steve and I know what to do and how to move forward.

When I was told I couldn’t talk to area providers, I asked for proof of that.  I wanted something in writing that says I cannot.  After her telling me the same thing three times the case manager reacted in the following way….”fine, talk to whoever you want.” 

I realize this relationship is not going well.  It is feeling a bit contentious and argumentative.  I have helped so many parents get the supports they want/need for their adult children.  Why am I finding this to be a power struggle?  Why is it so hard to get them to listen to me?  

Because I am Brandon’s mom.  And I get emotional when I feel like someone is assuming they know what is best for my child.  That’s it.  I am his mother and this is what I am suppose to be doing for my son.  Last week, I contacted an advocacy group and am meeting with our advocate early next week.  I am so hopeful this helps in communicating our expectations. 

So…send some good vibes our way!!

Leave a Reply