I've mentioned that I am having a lot of problems with the people that provide my daughter's mental health care. I sent a letter to the Governor and the Senator. I got a call back from someone in the Department of Health Services and he said that he was filing a formal complaint on the behalf of my daughter. I told him that I was worried about reprecussions. He said to call him if that happened. That's been over a week ago.
Suddenly, today Julie gets all these phone calls from her case manager saying that she's missed all these appointments that Julie never had. I know because I've been keeping track of them on a calendar with an extra copy in my purse. I highly suspect that this woman is putting whatever she wants to in her computer to cover her butt only she's not actually communicating any of this to my daughter.
So the case manager gets on the phone and declares Julie has been missing all these appointments. They are now messing with her meds, a dangerous thing. She said that she sent a letter that Julie never received. I know that for sure because I pick up the mail.
Then right after that someone else calls from the same place and the first thing they start asking Julie is if she is okay living with me, like maybe I'm not taking care of her. I had stated that I am very ill and I need them to do their job in helping her to appointments and getting things done. Julie did a real good job of stating that she wanted a new Client team because she felt that they were always aggressive and humilating, that they always ganged up on her. She doesn't want to do a staffing because that's all about blaming Julie and none of them ever follow through on their responsibilities. Her case manager has had no contact with Julie since she moved in with me in September. It's obvious how much she cares.
Several times Julie requested that they talk to me. But they refused. They don't want me in the picture. I think her Case Manager is scared to death of me. She must not be used to someone standing up to her abusive behavior.
They seem to think that they can take advantage of my daughter's mental health problems and just slide by without even the minimum of care. I was told we could get some financial assistance. But no, not unless we are being evicted.
They are not trying to help Julie. They had her conversation on speaker phone, but wouldn't let her use me as her advocate. Julie has right to have someone advocate for her whether it is me or someone else of her choosing.
I'm sure the complaint is the reason that they are calling. But they are still trying to cover things up. I don't think they have any idea how far I am willing to go to make sure that my daughter gets the care that she needs. I have no problem talking to the Governor, Senator, Disability Advocate and finally the media if things don't improve for her.
The really sad part is that this is their standard operating procedure. And they openly lie to me and my daughter. They put things in her file that are not true. And, then it just continues to snowball. It is no longer about helping my daughter get well and function on her own.
I guess this is progress. But it is so upsetting. They legally have a responsibility to my daughter that legally I no longer do. Of course, I do all that is possible for her. But with as ill as I am, it's just not enough. And, having to fight them all the time just makes me more ill.
I get so discouraged with all this. Julie tries so very hard and doesn't deserve the treatment she has received. If she got just one caring Case Manager, it could change her whole life.
I really worry about her if something happens to me. This is one of the biggest concerns I have. She still needs help and without me, I know she won't get it. With the upcoming surgeries, the severity of my illnesses and my lack of mobility, it does cause me great concern. What happens to her if I'm not there? Have I taught her enough to make it? I've been actively trying to help her build a support system since I got so sick. They have undermined my efforts all the way.
I know that no one else in the world is going to be there for her. Her dad and her brother still haven't accepted the reality of her health problems. So all she is left with is what the government agencies provide.
I hope that they are really going to make a change in her care. But my confidence is really low. But I don't appreciate them trying to blame me as not providing for her. But that's their game, blame everyone but themselves.
I LOVE YOU DEANNA. That is what WE have to do. I had to sue them but I should have known that the repercussions of that were they kept me out of the picture. Why didn't I write my Governor or Senator??????????????????
You need to write them another letter saying all the LIES they are saying about appts. etc. PS I know for a fact that Julie can demand you are there. They would brain wash Kelsey and I would never know from one meeting to the next if she (Kelsey) would let me go.
I know for a fact they put things in Kelsey's file that are not true. IT MADE ME CRAZY. You couldn't win but you can girl. I would never want you as an adversary.
I went to PT today. Tired or I would cheer for you more. YOU ARE A GREAT MOM Like Roxy says Deanna just forward a copy of your above posting to the Governor, Senator & Department of Health contact then you will believed instead of some case managers trying to cover themselves because of their incompetence. You sometimes wonder how these people manage to get these jobs. It is a battle for you that you do not need but you will get there in the end. You are on the way now so keep pressing on.
Deanna, these people should be helping your daughter not victimising her. Is appalling that they should use your illness against the two of you. Disabled people all over the world have babies and look after them all the time, should that baby,child,teen or young adult become mentally ill then they should support you as a parent not discriminate. If I was in the USA i would wheel my chair right along side you to fight for her rights. Keep fighting.My thoughts are with you.
I think it is time to call your contact at DHS. I hope you can record your calls with the case worker. It should not be like this...
I don't believe any of us tax payers want our tax dollars spent on creul treatment of those in need. I think if people knew there would be a big fuss, maybe enough to make a real change in the system. Our newspaper up here has been running a special article in the Sunday paper about how people with mental illness are treated. This not only happens to you and Julie, but I have read similar accounts of the same treatment happening up here. It is amazing that the most fragile people of our society are treated in this manner. It is inexcusable.
You are a good mother. The blame here lies within the system and the incompetent people that work for it and run it. You have proof of Julies appointments. You can fight them and fight this. You are a strong woman and you will prevail. If legally Julie has the right to an advocate of her choosing and they refused you, contact a lawyer. Get a lawsuit in motion. You can do this. Maybe your purpose in life is to expose these things and get something done about it. You do a very good job at it.
I appreciate all the support. It is so overwhelming dealing with all of this.
I decided today that I wanted to talk to a local disability lawyer about my case because it is so difficult for me to spend hours on the phone. The lady I talked to me actually upset me quite a bit and I need a reality check from all of you. She said the following:
I was turned down for disability because I haven't been off work a year. She said that is their rules. That's not what it says on their web site or in their paperwork. But she insisted that's the way it is.
She also said that if Social Security thinks that I am taking care of my daughter then they would consider me able to work. Now, how can that be? If we take care of the ill members of our family, then we can work? She said that even my giving her rides to doctors could count against me. At times, my daughter also takes care of me. Does that mean she loses her SSI? We both are in bad shape, kind of in the same leaky boat. And, now we can be penalized for this? I don't see how this can be right.
She also said that SS only wants the last year's history, that they ask for all those previous years but they never look at it. Yet, Binder and Binder is asking for every single thing in my history. That's why it is so tiresome to do.
The only good thing is that they said that they would do my appeal letter to SS and write a letter to the AZ assistance programs that I am filing an appeal. But I've got it all written and ready to go. I don't know what to do here, go with the lawyer that insists on everything being done over the phone or one that is local.
As I write this, I have a lot less confidence in what this lawyer's office told me. I think I trust what I put in my appeal letter already. I tried to sit at the Social Security office today to physically get it date stamped. But it was too hard on me physically to do so. I guess I will take my chances with the US Postal system.
But I would like to know what some of the rest of you think especially anyone who has been through the process already. Or, just speak up. I need input.
You do not have to be off from work a year before you are eligible for disability. I retired from my job on a disability pension the end of June 2003. I waited 3 months to apply for SSD. I thought there was a waiting period of 6 months before applying. Not so. The woman at SS who took my claim told me I could have applied the day after I retired. As far as the records go they requested ALL of my medical records from all of my doctors not just the ones from the previous year.
Deanna-it is so infurating hearing how they are treating you and Julie. You would think and hope that people in that line of work would be there because they really care about helping people and doing the right thing, but it is so sad they don't. It's just crazy that people who really need help from systems they have paid into have to spend so much time and energy fighting for help.
I pray that the preson/people working on you and your daughter's case would really have a touch of compassion and that they would be lead to support you and not fight you. Hang in there. You are in the right and do not deserve the things that are happening. Praying that you will receive good news with your next interaction.
Tara
you dont have to be out for a year..they just have to feel that you will be out for at least a year...and they want to know your entire work history to see if you could go back to one of your other jobs/types of jobs. Yes..I could see how your taking care of her could be perceived as you having the ability to work. But..that is tricky..and I think the proffessionals should know exactly how to handle that...is binder and binder the ones on the phone? I would stick with them..this person you spoke with today...I dont know..doesnt sound like they have it together...
I mean I take care of my kids...and that has never come up..and this group that is advocating for me...the owner of the company is a retired disability judge..he knows the system inside and out.
As far as the phone calls...I would contact the person who said to call and let them know if the case magr started taking it out on your daughter..cause that is exactly what they are doing.
I don't like the advice of this new lawyer's office at all. She isn't the lawyer and she kept pounding on this one issue which was only brought up that I also had a disabled daughter. That's important to mention because if I get SS, then Julie gets upgraded on her SSI to 75% of my award.
I'm going to stick with Binder & Binder. But being on the phone is really hard. I just hate lawyers. The only one that ever did a good job for me was the bankruptcy lawyer. So, I get real nervous when dealing with any of them.
Okay, I am going to have to call the Department of Health Services again. Julie had an appointment today. During her visit there, they took her to a back room and gave her the Sopranos treatment as to why did she want a new Client Team. Julie didn't fall for that. Then they said that why didn't she just go to another center. Julie doesn't want that. She's finally got a really good counselor after years of trying and she doesn't want to let that go.
Then, get this. I filed the complaint that they were not helping Julie. So, now, suddenly they have a food box. But I have to come pick it up. At the same time, they are quizzing Julie about the nature of my illness and why couldn't I just give her rides all the time.
Because it's not my job for one thing. They have always put this on me. I used to have to leave work all the time to get Julie to appointments. They never mentioned once that Julie could have transportation provided for her mental health and regular health appointments. So, I lost countless hours of pay.
Now, I don't mind helping Julie and supporting her. But I need help.
Also, we had asked for help getting some of Julie's services restarted. Oh, well, they said that I could just go and drop these off at the department. Obviously, they can't be bothered. I can't do it. I finally had to put it in the mail.
Now, this Case Manager is going to try and come by tomorrow -- for what, we don't know. We thought it was to help Julie get these services back.
You know what Julie said, "Tomorrow she is going to be on my turf. If I don't like how she acts, I will just ask her to leave."
I am so proud of how she is learning to stand up for herself. It is obvious that they hate us for it. But I am definitely calling this guy again and tell him how they are treating her.
Deanna, you just have so much to deal with. I don't know how you can do it all by yourself. God must have given you an extra supply of inner strength, Sweetie, because you just keep on going.
Trying to deal with Binder & Binder by phone must be very difficult. I only saw my lawyer in person once, I think, and worked with one of his paralegals while they were gathering all the statements from my doctors and any test results I hadn't been able to get for them. I have always tried to get a copy of my test results for my own file, but now I really insist on it, even if it is just blood work.
I have a lot of doctors and they all appreciate the fact that I can give them copies of almost any test the other docs take. And I like that they all know what each other is doing.
Anyway, the woman you spoke to doesn't have any business giving advice to potential clients, since she clearly doesn't know anything about Soc. Sec. Dis. law. The others were right. You do not have to be off work for a year to apply; just must be expected to be unable to work for at least a year.
Where did you find this lawyer? I personally do not care for lawyers that advertise, although, how is one supposed to know who to call otherwise? I happened to have an attorney, because we had our own business for 22 years before I became disabled, so I called him. He suggested I call the local Bar Association and ask for a referral. That is what I did. There is no charge for this service and they follow up after the case is over to see if you were satisfied with the lawyer they referred you to. Just a suggestion, in case you become too disgusted with everyone. But if you signed with Binder & Binder you might not be able to change. Just check your contract first.
Good luck, Sweetie
I'm thinking of you,
Nini
GO JULIE!!! :) Good for her. Maybe this is an experience that she needs - always try to look at the positive....what a crappy saying, eh? Deanna, I'm so sorry to hear all the trouble you're going through. I haven't actually gone through the formal disability process (although I've come close), so I'm going to let those with more experience advise you. I have actually been doing better with the half time, but it takes a lot of energy that keeps me from getting on the boards as much as I could. Please hang in there. You are one smart, tough lady and in my thoughts and prayers. Julie is lucky to have you. Maybe you need to send copies sof some of these transcripts to Julie's father to let him know how important it is he take some of the responsibility.
Nini, thanks for your advice. I'm keeping the phone appointment with this lawyer on Friday just to tell him what I think of her giving me advice like that. I haven't signed a contract with anyone yet. If I have to go with someone besides Binder & Binder, then I will do as you suggested.
Katie, thanks for the cheers.
Linda, good to hear from you. I figured you were too overwhelmed but I do miss talking to you and I miss your input on the board.
Unfortunately, Julie's father will never understand his responsibilities to her. He's kind of parent dumb. Well, he's people dumb. It's a shame because he is never going to know this wonderful person she is or her brother like I do. I wish he was different. I've prayed for and I've sacrificed trying to help make it happen. But it is what is. Maybe he will surprise me someday, but I doubt it. I just know that none of us can ever count on him. This is a man that I have had restraining orders against, had to use lawyers for. I used to be scared of him, but not any more. One lawyer too many and now he won't ever cross me again. It's funny too. He's 6'4" and I'm only 5'. I wish he was a good father though. It's what I always hoped for. My real dad died when I was three and I did everything to give my kid's dad a chance in their lives. He has destroyed that all on his own. But they still let him in their lives. But I tell them that the relationship is up to them now, not him. Years of warring with him probably made me into the fighter I am now. But I would have wished for peace instead because warring parents are the worst thing for kids. Sometimes, though, you have no choice. Protecting kids is too important.
Still, if he was a reasonable, caring man, it would be a wonderful suggestion.