Mini vent...
3:33 PM Posted In gabby , regional center 24 Comments »Good. Great. Except my service coordinator is a mean, mean lady. The frst time I met her (she came to my house) I chalked it up to her having a bad day or something. Since that day, I have probably talked to her a total of three times maximum and she has been just as pleasant each time (I hope you read that to yourself in a sarcastic tone.) Anyway, she stayed true to form when I called today to inquire about respite care.
Respite care is one of the wonderful benefits that our regional center offers. I really didn't know how it worked, but after talking to a few other families who have used it, I thought it would be nice for us as well. So I called my coordinator.
After I got off of the phone with her, I felt like a complete scumbag or something. She belittled me, like she always does. EVERY time I call this woman she makes me feel like *I* am trying to cheat the system or something...milk them for everything they offer. Yes Gabby receives therapies, and yes she receives her formula through them (which BY THE WAY, she did not inform me of, the Sacramento County of Education let me in on that little secret) But it's not like Gabby is in EVERY therapy they offer...she does physical therapy once every two weeks. Period. End of story. A lot of kids receive therapy more than twice a week. I could be asking for A LOT more, but I am not doing that just yet...I will eventually though. Who wouldn't want the most for their children?!
Anyway, when I was asking her about it, she immediately goes on the defensive saying things like, "this is in no way DAYCARE for your child." I was dumbfounded. At first I thought she must have taken my tone wrong, so I tried reminding her again that I was merely inquiring about what it was..not that I necessarily wanted it at this time. She then goes on to say that Respite care is only for use when a family is going through a "HIGHLY stressful situation."
So I tried to word it differently. "What type of situation would be considered 'highly stressful'?
Silence...
"Well, say you have just HAD it. Say you just NEED to get out of the house for a couple of hours and go shopping. THEN, you could use respite."
OOOOOOhhhhhhh! I get it...so pretty much every second of every day of my life qualifies for respite. Got it. (No I didn't say this...I was in a bit of shock still.)
She continues with, "you know, when people plan for a child, they usually also plan for daycare...we're not here to pick up the slack where parents forget to." What the EFF?!!! By this point, I am losing my mind but somehow, some way , I managed to keep my cool. I bluntly replied with, "yeah,I get it...and I hope YOU realize, *I* am not trying to get free daycare out of you. I was honestly just inquiring about it...I wasn't quite sure how it works, so I thought I would ask. I am NOT here to cheat the system and take advantage of the regional center." And then she chilled out a little bit, but still...I was VERY upset.
So after thinking about it for a little while, I realized this woman needs to find a new occupation. I am sick of her acting like this over EVERYTHING. She put up a fuss over the formula too, but after jumping through a thousand and one hoops, we ended up getting it. I am done with the whole hoop jumping business. So I called her supervisor (who was away from her desk) and left a message asking her to call me back. I am requesting a new coordinator.
I just don't understand why she acts like this. Is it just me, or is it every family? I wonder if there are other beneficial programs out there she purposely is not mentioning. It seems to me that people in this proffession are usually in it because it is a highly rewarding job and they want to help others. This woman seems to think the complete opposite. I am thinking she needs a new job. I think she would fit in well at the DMV or the airport or the post office. You know, where the kindest, most sincere and helpful people work. (I am still terrified of ALL of these places. I am scared of bullies.)
Okay, I feel better...hopefully we will be assigned a new coordinator this week. I'll keep you all posted.
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24 comments:
The whole time I was reading, I kept hoping you could get a new coordinator. I am glad you called the supervisor. That woman is just hateful.
What a horrible woman! I am so proud at how you handled yourself and the situation. I hope the supervisor see's your side and assigns you a new coordinator. You are going through enough stress with your baby and don't need her adding to it.
When Seth was in the NICU, I also had to request that he get a different nurse. I am sure she was qualified, but she rubbed me the wrong way. The nursing director agreed that my baby could feel my stress and would get better faster if he had a calm mama.
That is horrible of her! I would demand a new ROC also! There is no way that you should be treated like that. The fact that Gabby has DS qualifies you for respite without any backlash from her! I'm so mad for you and still jealous that you get your formula from them too (hehehehe). I wonder what my ROC would say if I asked for that and respite in one phone call...I should try today or tomorrow and see the response I get.
Good Luck with it and let us know what happens.
ARRGGHHH!!
Ok, that effing sucks. Sucks!
I can't stand that woman and I haven't even met her.
Let me tell you what I know:
Respite: You should get at least 24 hours/month. Maybe you want to go shopping while Cam is at school. Maybe you want to do homework or take a nap. WHO CARES! It's all about you. The SC should not be making judgement calls about what you use respite for. You qualify. Period.
Day Care: Totally separate. Since you don't have Gabby in daycare, she needs to shut it. If you did, you could request reimbursement for a portion of what you pay.
Ask for Aqua Therapy if you want (My RC doesn't offer it, but I've heard things are better where you are so maybe?). Totally fun thing for you and Gabby. Plus, it helps. That's what EI is all about, right?
If you ever need diapers after 3 y/o know that you can ask for those too.
grumble grumble grumble
Oh Sheree.. I am so sorry you have to deal with this horrible lady.. I went through some extra care for Ashleigh (because she was born so premature) and she rec'd physical therapy once a week for over a year. The PT was the one who offered up the most info for me. She informed me how to get the formula I needed (paid for). She informed me about the Respite care and she also informed me how to get something called 'in home supportive services' which the state paid me a salary to care for my child because she was 'deemed' special needs. They sent a case worker out to evaluate all I do for her (medically and above the normal parent stuff) and then they gave me a salary to which I could hire a nurse or pay myself. Boy that helped since at the time I had to leave a $65K year job to become a stay at home mom (blessing in disguise) but not the plan. So...try and talk to your PT and see if they can give you info about other services because it does seem like this big underground world that they don't want to let us know about. I still to this day never rec'd any help from my case worker. Keep plugging and don't let them push you around...
Bye the way Sheree, I am anonymous. I couldn't figure out how to post my name...
Keli Vannatta
That is just horrible, Sheree! If this women were just being rude to you, that is one thing. But her judgemental attitude is affecting your precious daughter. That's when the gloves come off!
I'm proud of you for calling her supervisor. Gabby deserves the best she can get!
OMG! I'm speachless! Isn't she supose to be there to help you?!?
It's a good thing you call her supervisor. No one deserves to be treated that way.
I am so glad you called her supervisor. She needs to know how that woman is treating her clients. I would simply ask to be reassigned, I'm sure you are not the first person to ask this if she is always like this.
LOL about the DMV!
Welcome to the regional center. Don't think for a second that any other coordinators are any better. I am STILL 2 years later, waiting for my respite for Brianna. Reginal here SUCKS DICK! They provide NOTHING and do not tell you all the things they SHOULD be doing for you. Push for your Respite it is your right and complain to higher ups. You keep them in business. They get finds just because Bri and Gabby are on their "books" and want to offer us nothing. Our kids fund thir paychecks so do make them provide for Gabby. Also Call me I can give you info about IHSS..
WTH is wrong with that woman?
Respite care is exactly what the word freakin' means---time away. Dumb A** lady.
I have no idea how you kept composed, I would have snapped!
Hoping you get someone knew and BETTER fast! Although, I have to say I'm in awe that you've had the same one for 8 months. No kidding, our case managers (same thing as your coordinator I believe) are like freakin' revolving doors. I could never remember who they heck was Jakie's!
ohh im so sorry you had to deal that whench of a woman!! i have worked the people with DS and they just make my whole day brighter. they just see things different and it doesnt matter to them! I hope you get a new case worker. i have dealt with people like that here with our headstart/preschool.
Good for you!!! but I do have to say that anything like this will always hoop-jumping games. You will eventually get use to the terms and rules that they play by. I promise even if nothing changes the game gets easier as you learn all the in's and out's. I am sooo proud to hear that you stood up to that *%$#. Just message me anytime when you want to talk about medical redtape BS. Last but not least DO NOT ever! feel bad about asking for or about options that are out there, they are put there for a reason. Keep your head up!
Holy crap! I'm so sorry you had to deal with that, I absolutely hate people like that, thus, I avoid the phone as much as humanly possible. I really hope you get a coordinator who's not such a shit, and really, I think you could totally benefit from respite care and it's really no one's business to decide what's highly stressful and what's not! You're such an awesome parent though, putting up with all that down talk so that Gabby has all the opportunities, yay mommy!
I hate it when someone in any organization acts like the money is coming from their own pockets.
She should be telling you everything that's available to you, that's her job, you shouldn't have to be extracting this information from her.
As you've already figured out, you're going to have to be and advocate for yourself and Gabby's rights. Rights aren't made up by parents or children, but by government and local agencies and it's no one's job to stand between you and your rights.
There's an institute in Philadelphia that is able to work miracles for children with down syndrome. They started out treating children with brain injuries by activities and therapies that stimulate the development of the brain and nervous system and have been working with children with down syndrome since the 70's. I will try to find you the link for them. Most children with down syndrome can learn to read, play sports, musical instruments and do everything any other child can do with the correct early intervention. I started looking into everything because I am 44 and pregnant and wanted to be prepared for any possibility and would never have terminated.
I grew up with a stepbrother who had down syndrome and I loved him very much. He was the most compassionate, loving and psychic person I knew and he had loads of potential that was wasted by a cowardly parent. There is a huge support system in place for parents of children with down syndrome, maybe you can see the person who's blog I subscribe to..she has hundreds of friends whose children have down syndrome. You'll love her blog (her name is Lisa and her blog is called Finnian's Journey) and she also lives in California (I think you live in California?)
Anyway, I'm Adrina's mother Darla.
http://www.iahp.org/
http://www.braininjuredchild.org/
You'll be so amazed!
That is just NUTS. So glad you made a call. You make sure to tell them exactly what she said! Once I tried to get services thru an agency because of Mercede's heart. They sent out this horrible nurse. Mercede would throw up for days when ever she tried solid food. She would even throw up water. The nurse told me "Well you know it is all in her head"
Well no it wasn't, she had an stricture that the food got caught in and wouldn't let anything else pass for days until it eventually moved down.
I do know that respite is different everywhere. I get $200 of funding a month for respite. I used to have to pay my respite person ahead of time and they reeimbursed but now she is hired thru them and they pay her. If they are under 16, I am suppose to just use it for when I need a break. But after age 16 I can use it for when I work. Which is mainly what I use it for, since I work every Sunday and don't have a sitter.
darla- thank you for those links!
I have heard of The Institutes in Philadelphia...I actually have a friend here in Sacramento who also has a child with Ds, who takes her son there. She has a blog too (three's a charm) and she is on my blog list. It has been something I have been researching. They seem to do amazing things there.
To everyone else who may be wondering- the supervisor has yet to call me back. How convenient. grrrrrrr!
How very frustrating. I'm really glad that you are requesting a new coordinator and hope your experiences going forward will be better.
I just found your blog today through Jen's blog - but think I remember you from BBC back when Gabby was born. She's adorable and seems like he's doing great. All my best to you and your family!
I am so glad you are going to talk to this woman's supervisor. You deserve all of the resources, guidance, and advice you can get. Any parent does who has a special needs child. This is ridiculous and you, Gabby and your entire family deserve the best and I am so glad you are setting out to get it!
Lots of Love,
Nichol
Dude. Normally I lurk, but this woman has brought me out.
Dude! Even if you were "milking" the system, it would be in your every right to take EVERY advantage of a system designed to help your child. It is what it is there for. You should be "milking" the system. I sure as HECK would be, no holds bar.
I am so glad you stuck up for yourself and your family.
Go on with your bad self. Dude.
Oh Sheree!!!! I can't believe your case manager. Unbelievable really!!!! I would make a call everyday to her boss until you get reassigned. Every day is precious to your Gabby so don't let them put you off any longer. Let's get together this week if possible!!! I know you are busy with the kiddos and with school but I'd love to see you. There is a Tuesday playgroup in the am if you are interested. Email me :)!!
Yeah, she is definitely in the wrong profession. How frustrating! I hope the supervisor can help you - maybe reassign someone else?
Hi Sheree, This is Joyce. I hate to be the bearer of bad news, but welcome to the system. And just when you think you have it all figured out, Gabby turns 18 and the whole process starts over. Deep breaths, that's what I've taught myself over the years, deep, deep breaths anytime government money is involved. Great job holding your ground though. I hope the next one is somewhat better with the additude. They still never want to give anything away for free without many hoops. When Sarah turned 18 we had to go through the whole process with the county board of MR/DD, again. We were denied services three times, like the Ds magically goes away at some point. It was so frustrating. Ok now I am venting, sorry. Hang in there.
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