Wow, @sryrstress I wish we had that service up here!
Ugh, it gets so tiring. When I called the ride service a couple of weeks ago, they told me it would be $2/mile to transport my son to and from work… OK, 6-mile round trip means $12. I could swallow that.
I got the first bill today. There was a $25 “Fare” added each way! $62 instead of $12! I called and the guy who answered said, “Yeah, there’s a $25 fee each time.” Thank goodness I remembered the name of the guy I spoke to originally. He said, “A $25 fee??” He put me on hold for a long time. When he got back, he said, “I screwed up. I thought the $25 was just when we transport people in wheelchairs. But it’s everybody.” He’s going to talk to billing to see if we can work something out in the future. I will certainly not be sending in $124 for two round trips! I’m hoping they will cut us a break in the future. If not, we’ll have to resort to Uber at around $20 per round trip. Sigh.
Oh my, what do people do who don’t have active family participation? This is silly.
Oh, it gets better. DS got a letter from SS saying his benefits for August will be zero. 
Why are they sending HIM that letter? I usually get them. This will only stress him out. Plus it’s crazy. He emailed me the letter and they have their facts all wrong. Surprise, surprise. So between his case manager and me, we will get it worked out, but it’s maddening.
My daughter, as some of you know, was diagnosed with bipolar 1 “with psychotic features” 10 years ago. She also has severe ADHD and a learning disability. She is valiant. She is slowly doing college, as I mentioned, and after working at a number of low level jobs, got a position working with autistic kids. She enjoyed the training and felt like a professional. At times I worried about her devotion to them, but for the last year she has been so proud of her work.
Throughout her time at this agency she has expressed some concerns about safety. She and a coworker were alone in the building with a client w/a history of aggression, who became violent. The co-worker got hurt (later found to be a brain bleed; the client got her on the floor with a hair pull and repeatedly kicked the back of her head), and my kid got the co-worker into the bathroom,then left the kid (who broke a window) to call the mom. (No cell phone in the room) The mom always helped when he was aggressive. Granted, she should have called 911, but the workers are so used to aggression on the job, she just didn’t get that this was different and required police… It is hard to judge when not on the spot, with an injured co-worker and a client out of control. The mom had always been the go to person for control.
The mom reported the agency to child protective services and my daughter was called to an interview today. I did not have enough notice to get her a lawyer. Due to HIPAA I didn’t think I could accompany her. She has been accused of neglect and DCF supported it today. The mom of the client is distressed because she is a huge supporter of my daughter and was unhappy with the agency, not the workers.
I am just heartbroken. This will be on her record and may destroy her dreams. She has worked so hard and loved those kids. She was caught between a rock and a hard place with worries about the kid and the co-worker.
I am searching for advice, legal resources, and info on the consequences for her over the long and short term. I don’t even know if it is okay to post this. PM me if you can.
@compmom, I don’t have any advice, but I’m so sorry. Good luck to your daughter.
Execuse me for budge in, but anyone knows what happened to the OP, @dstark ? He has not been active since 2016, before then, he was a polific poster.
@artloversplus I emailed dstark a message in December 2016, asking about him. He said he was doing well but gave no other details.
The ride service is going to send me a new bill, taking off the ridiculous fare. But they can’t give him any more rides at the reduced cost. So I was all set to use Uber, but DS’s wonderful case manager convinced the Medicaid-reimbursed ride service to give him rides at no cost! 
At least for July. We’ll see what happens in August.
I figured out that SS thinks DS was in the hospital through March, when he actually got out on February 14 - that’s why they are dinging him so badly on benefits. I called MULTIPLE times to tell them his discharge date. I know his CM called, too. So now I have to get written documentation from the hospital and file an appeal. Unbelievable.
@compmom , is your daughter a Registered Behavioral Technician (RBT)? Does she work under a BCBA or licensed behavior analyst?
scholarmin I will PM you. This kind of thing affects service to kids with autism. As well as those who want to work in the field. I have hired a lawyer.
@compmom
What specifically is your daughter accused of doing or not doing that constitutes neglect? I’m pleased you’ve retained an attorney. There are avenues for appeal, with the goal of ensuring your daughter doesn’t end up on a central registry. My sense is this situation is a licensing issue. Your daughter was placed by her licensed employing agency in a situation that exceeded her capacity.
I will PM you agreatstory.
Glad you have a lawyer, but sorry you had to get one. Seems like she was in a very tough situation. as to what to do with inadequate training. I hope further investigation shows what really happened and this does not follow her. Hopefully, the mom of the kid will be in her corner.
If the mom can make a statement (written or at a hearing), that could be quite valuable. The kids need someone like your D, who clearly cares about them and enjoys her work.
The Dignity of Disabled Lives
The burden of being perceived as different persists. The solution to this problem is community.
https://www.nytimes.com/2019/09/02/opinion/disabled-human-rights.html
Ugh, now my son has decided he doesn’t like his current job. He was talking about looking elsewhere for a job, but now he doesn’t want to do that, either. He’s worried himself sick about it, literally. He doesn’t feel like eating or drinking. I have a big work deadline today, but I’m going to make the 60-mile round trip to pick him up. Less time-consuming than if he were admitted to the hospital. And he was doing so well.
@MaineLonghorn — you are an awesome parent! Your S is so lucky you’re always there for him. Sorry about this new bump in the road.
@MaineLonghorn -
How is your son doing?
AND how are you?
Our DD herself and her living situation have been stable for months. Happy for her and us but always waiting for o th her shoe to drop.
I retired in July. Could not cope one more day in the chaotic work environment.
We have “enough” saved we think with SS included.
Still trying to figure out the optimal financial plan for our family. Collect less SS now and let IRA grow? or live on IRA/pension now and take larger SS later?
I think I can use online calculators and live help at SS office to come up w “correct” answer if it were just DH and me.
But everytime I include disabled adult D in the picture. I just get more confused.
She currently collects some SSI and some SSDI on DHs record.
When I collect SS. she will lose all her SSI and receive a larger SSDi benefit.
Sounds like a good thing for her to receive more $$$ per month.
But when she loses SSI, she also loses Medicaid. NOT a good thing at all. No Medicaid means she also loses her budget thru the state that pays for her support services that allow her to live in a wonderful shared housing arrangement with staff assisting.
I’ve been told that she (we) can go to the county social services office and they will reinstate her Medicaid under the DAC (Disabled adult Child) rule.
That allows Medicaid to be reinstated if the disabled adult child lost Medicaid solely because their parent began collecting SS.
It is terrifying to think of disrupting her life that has taken so much work and time to construct.
But I hardly think I can just not collect my SS benefit and still be able to eat.
And this is all defined in stone according to the SS rep…its not as though she can just decline her added benefit when I file for SS.
Sorry for the long vent.
Would love to hear of anyone who has successfully navigated thru DAC land!
I’m thankful for this thread and the generous posters!
@musicmom, thanks for asking. Wow, I get so confused about our SS and SSI for our son. Good luck with that!
DS is doing pretty well. He drove for the first time in a couple of years this week! DH took him out. He’s still not interested in working.
Medicaid denied him supportive services at his apartment (aide twice a week), saying they’re “duplicative.” Well, the house staff where he lives is not providing any help, so it’s nonsense. I’m going to contact Disability Rights Maine - they said they may be able to help.
I went to NAMI Maine’s annual conference today. If any of you can go to your state’s conference, I highly recommend it! I always learn something new. The keynote speaker was a woman named Pat Deegan. She got schizophrenia when she was 17. She has a PhD in Clinical Psychology. She is a big believer in “personal medicine” (in addition to psych drugs) - the idea that there are things patients can do to help themselves.
She has developed a series of “Personal Medicine” cards to help people cope with their challenges. I’m going to buy some of them for my son. 
https://www.commongroundprogram.com/people
I also talked to a TV reporter who got an award for his stories on mental illness and told him about my kids. He wants to do a story about my younger son’s experiences living in Beirut.