FRUSTRATION | Autism PDD
so what about the unused hours from when my in-home provider was on
maternity leave? she was supposed to take only six weeks off, but
because she's "good friends" with the people who run the agency, they
let her have three months off. i went THREE MONTHS with absolutely NO
in-home. during that time i was getting NO services at all. my case
manager said that money could be used to buy my daughter a new bed, but
i had just gotten her a new bed six months earlier! she didnt need it!
now i'm curious. what can i do about those hours during her maternity
leave? could i possibly put that towards respite? if i'm approved for
respite, i'm allowed only 24 days a year. could i get more days if i
use the in-home hours from the maternity leave? i'm not sure how this
all works, and my case manager is out of town until wednesday. 
Are you on the Family Support Grant with the budget? And in it is the pca hours? I know here I have that option where I could be on that and they will reimburse me. But the accounting department is a mess so why would I want that option? I have the pca hours paid by medical assistance. But if the provider was such good friends with the agency where was your backup provider? Yeah I know, I am suppose to have one with the agency I am with but don't. Go figure.
And I get the waiver from the county for overnight respite care. As far as the approved days, there is a limit. But if your kid has behaviour or aggression issues you can request additional days. And generally you do get them. As far as the unused hours , some agencies have certain hours. Like some of them have it where the pca can't work from midnight until 6 a.m. Depends upon the type of program you are in.
Tammy
Michelle what I would suggest doing is make a pros and cons list on the current PCA. And look at the list. For example if she has many excuses why she can't come in that day, that would be a con. If she refused to take him outside because it was too hot I would consider that a con. If she stayed on the phone or just sat and watch tv that would be a con. I have had pca's that have done this. One summer I went a whole month without a pca and with no overnight respite care. The overnight provider was on vacation for a month. That was a very tough month to say the least. I know the kids current pca's last day is August 6th and it will probably be months before I get another one. The agency I am with screens them and trains them before even sending them out.
As far as banking the hours, here alot of parents do that. The agency I am with has a day summer camp and I can use those pca hours towards the day camp. I know there was a sorta push to make it where you couldn't do that. Where you could only have so many hours a month and if you didn't use those hours in that month, you lost them. But I think that might had died. I haven't heard anything about it passing.
Tammy
Boy Michelle, I just don't know what to say. I certainly feel your frustration and could guarantee you, if I lived nearby, I'd be there in 5 minutes...(of course you'd have to kick me out becuase I'm a complete stranger with no credentials!)
I have no experience whatsoever with Respite or any other type of assistance for that matter, so I have no sound advice. But I wanted to be sure to let you know that I really feel for you and your situation....I wish I could help in some way and I really wanted to let you know that I think you do a great service and offer so much support for so many people here...I wish we could repay you somehow.
~Lesley
all i know is that we're on the MR/RC waiver, but i think our in-home is paid through medical assistance. we were not given the option of a backup provider during the maternity leave, but one of her other clients got a backup. i guess
thats what happens when the city girl "outsider" moves to a small rural
town where everybody has known each other their entire lives. it seems
like such favortism.
Well with the agency I am with they said they didn't have enough people to have a backup. But I might just insist on it this time around. They are getting older and the teenage years and.................. lol you get the point.
Tammy
oh, the teenage years. i am NOT looking forward to that. you have my sympathy!
Michelle, you are in my thoughts. I have been worried about you, and I
have been thinking about you. I would help if I could... if only Ohio
weren't such a big state! I just wanted to let you know...
Hey Just wanted to say Thanks to everybody for the support. The respite we recieve has to be scheduled certain days and hours every week (always the same) if I need something different it has to be called in asked for an approved. I don't get overnight respite, and the hours cant be banked or rolled over Use them on the day they are there or lose them.
I have thought of the pro and con list Tammy suggested and our provider does the things you mentioned. She has cancelled because its snowing, or because we are supposed to get bad thunderstorms (she does live about 40 minute drive away) She has cancelled because her boyfriend is home from work and she wants to see him. She cancelled because her boyfriend had his wisdom teeth pulled, she cancelled for her personal appointments which I dont understand why they cant be made around her 3 hour work days?
I live in a small community..... they have an agency but no one willing to come to this area to provide services... So its better to find someone willing to do it, have them get a provider number and go that route. Unfortunately I have to do the training
This provider will be fired AS SOON AS I get a new provider. I have 2 people who are supposed to be going through getting their provider numbers but it takes around a month or so, I figure for now though something is better than nothing until I can get someone more relaible. Funny thing is she just went through nursing school and is taking her boards in a week or 2. I wonder how often she will call off being a nurse, because her boyfriend is home? I know I wont be giving her good references!
I am also going to contact the case manager since I dont have to sign papers for her to bill I want to make sure she isnt being paid for her "time off". If she is,,...... I need a job like that!
Thanks Sarah How that Beautiful New baby doing? and How how are YOU doing?
Michelle,
Just want you to know that you are in my thoughts. I know you have been having a rough time with everything for a while now. I'm sorry that I don't know much about some of these things or maybe I could help more with advise. But as it stands I can just be here if you need anything. Hope things look up soon.
Sarah,
Yea!! I want to hear about Jaydin!! How are things going with her? Any new pictures? Has she already grown some? Are you getting enough sleep? etc etc etc..LOL
Karrie
*hugs Michelle* i'm sorry hun... this summer has been awfull for you.... if i was there i'd take tyler anytime.... if there is anything i can do let me know... even if you just wanna scream at me for a few minutes Hi Michelle! I haven't been around here much this summer.
I'm sorry to hear things are not going well........it has
to get better!! I am so sure!! What an
immature respite provider!! UGH!! What is
wrong with these people who don't take their commitments
seriously?!! I know it is hard for you especially facing
all this as a single mom......I hope you can find a wonderful respite
provider!!!! I wish I had had one when the
kids were smaller, heck , even now would be nice!!!!
I feel like all I do is run after kids, wash clothes and clean up
messes!!!! I got a summer job so I can relax a bit!!
going to work for just the few hours everyday is a break
from bickering of the kids.......unless I have to take them along....I
work at a swimming pool. My kids love the water so
this works out well.
Hang in there!! bonnie
Hey Michelle...just wanted to let you know you are also in my thoughts. I really wish there was something I could do to help, Just pack up the kids and move to Georgia..and I'll meet you down there and give you a break. If only life were that simple..
Hello Michelle sorry I didn't get to touch my computer until today (kids) so I am just reading your post... I am sorry you are having a rough time with your respite worker ..like you need that on top of everything else!! Seems to be a problem here too they can't find someone in the area.. or the person can't do weekends so on so forth. So I haven't gotten services yet either.I hope you get all of this straightened out for your sake and for Tylers sake.
Thinking of you,
Nita
You all are such wonderful supportive FRIENDS! I wish I could just pack up and move and find someplace that was all better. LOL Guess it wasnt written that way in the script!
I know I need to be a tougher person and stand up to the provider and tell her look if you want a job and to be paid be here when I need you not when its convenient for you. See, I know what she will do.... next week she will want to take him all day to her house and then bill for last week to get her pay she missed. And as tempting as a full day sounds (which I have worked out with her in the past on rare occassion) I think its BS! I need the help THIS WEEK, just like she needs the money - by her doing a full day next week to make up for this weeks missed hours she will still get paid but nothign changes the fact I didnt have the help! And I just found out that apparently if I know ahead of time I need more hours on a specific day (like when I go once a year to Pittsburgh to a game) all I have to do is call the caase manager and the hours will be approved, so I dont have to "work out a deal" with the provider! *thinking* I sure wish I knew that before!
Theres just so much mess right now in my life.... and I know everyone has that,.... but between losing the SSI, being told I have to move, not being able to find a rental big enough for my family for the "fair market" rental price to be approved, being forced to seek employment without daycare, as well as waiting til the end of the month to find out if Im having yet another surgery, supposed to be retrained (go to school) for a new job through workers comp, Tyler's regression (which hes doing better with as long as things are predictable and consistent) The whole school probem, needing to re do the IEP they wont touch until AFTER school starts, needing to get the new IEE done, and everything else as a single parent and no help ,,.......... gee yeah I guess I must sit around on my butt and be lazy right?
These people have no clue! Where is the help I had to belittle myself to beg and asked for?
Tammy, what is PCA? I keep seeing that notation and wondered what it meant.
Janet
I could just scream! The past several months seem to just be getting harder and harder to deal with anymore. I have become increasingly more upset, angry, stressed out.... I am constantly on edge! My son's respite provider knows this as SHE is who called the case manager to tell her my son had regressed, was having alot of problems and asked if he could have increased hours so she could help me. Well that sparked his case manager to say she felt he needed hospitalized, but fortunately his psyc. and therapist disagreed.
Its been rough and constant and I am being pulled in so many directions and keep having more thrown on me! So Thursday last week the case manager called for her update and I said when she did the home study a month ago she said he could have more hours... what do I need to do to get them? How many additional hours can he have? So we added 4 hrs every Saturday. Problem is finding someone who will do his hours, as our current provider doesnt want to do weekends because her fiance doesnt work weekends.
Anyway - I just got a call a few minutes ago from her.......... she says she can't come all week because shes got family problems going on and she couldn't talk right now but its too much and shes going crazy and she just can't handle it right now. Well I DONT CARE! I NEED HELP HERE I NEED my few hours I get! If I had anyone else who could do his hours I would fire her there and on the spot! Shes an independent provider so I find, I hire, I fire........ I can't get someone from an agency because there is no one for my area!
Im SO FRUSTRATED!
i feel your frustration. i have been having a lot of trouble getting approved for respite, and i have continually had problems with our in-home provider. i had a plan to get rid of our in-home next month and get approved for respite, but my case manager and in-home provider think differently and are trying to come up with a plan of their own. i keep telling them THIS IS WHAT I WANT! THIS IS MY CHILD! I WANT IT MY WAY! but they wont listen.i wont have time for in-home once my daughter starts school so i told my case manager that i was going to have to fire her. my case manager then tells me that i have to keep in home, and that our provider will take my daughter every saturday, and we can keep the extra hours in a "reserve" for when we need it. but i told her that i want my daughter at home on the weekends since she'll be gone all week. my in-home girl said she didnt want to do saturdays because her boyfriend will be home (grr!). i also told my case manager that i didnt need reserve hours because THATS WHAT RESPITE IS FOR! and i already have a respite provider that is MORE than willing to take my daughter anytime!! but nobody seems to take me seriously.
*whew* that was quite a vent session!
but point being, i feel your pain. sometimes this stuff is all just a joke. I'm so sorry this has been a bad summer, Michelle. I wish there was something I could do or say that would be helpful, but I can't even imagine being in your shoes and carrying the huge burden that you do ... with very little help to do it! You're always such an inspiration to all of us here and I feel bad that there's nothing I can do to give you some assistance or relief.
I've said a prayer for you. Good luck, dear.
Kellie
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