It was just a few days before the end of October, 2012 when I received the letter from the Department of Social and Health Services notifying me that Grandma’s benefits had been cut off. Grandma gets a meager amount of income from Social Security and therefore also qualifies for health benefits through DSHS. I count on her income to help pay for the increased rent and utilities I’ve taken on in order to have Grandma here. I can make do without it for a time, but it is not without hardship, and I don’t want Grandma to be without health coverage at her age.
So, it was with some small measure of panic that I immediately called her state financial worker and was told that the state had been notified by the Social Security Administration that she no longer had coverage, therefore DSHS was suspending benefits as well. This was rapidly going from bad to catastrophic. This made no sense to me.
I called Social Security and spent the requisite 45 minutes on hold before getting through to someone. I was informed that “several” letters had been sent to my Mom’s old address and when those hadn’t been responded to they had no choice but to suspend Grandma’s benefits. Really, they just needed validation that Grandma was still alive and qualified for benefits.
The tone of the SSA rep was rather dismissive and frankly rude. I explained the situation, that Grandma had been living with my Mom when Mom passed unexpectedly. It quickly became clear that with all the details we had to attend to after Mom’s death (moving Grandma, getting her established in Washington State, moving ME), we had missed the crucial step of informing Social Security of Grandma’s change of address. It was a minor oversight with big consequences. Without that change in address, any notifications from Social Security went into Mom’s old PO box, which was checked only intermittently by my Dad.
I explained all of this to the rep, who remained unmoved and unimpressed. She finally asked if Grandma was there to talk to (I truly feel that she thought she was dealing with someone attempting to scam the system). I told her that I’d put Grandma on the phone, but there was no guarantee that Grandma would be able to hear her or understand her questions. She wanted to give it a shot.
I put Grandma on the phone and she was confused. “Who?” “My name? Norma…Social Security Number? Oh I have it here somewhere…” With that Grandma put down the phone and started rearranging the coffee table, ostensibly searching for the Social Security Card (but forgetting instantly what it was she was searching for).
I got back on the phone and the rep’s tone had changed 180 degrees. She said she understood now what had happened and that she just needed Grandma to be able to verify who she was…but Grandma couldn’t answer the questions on the phone. She then suggested that I go down to the local Social Security Office and see what they could do for me.
I could feel my chest tightening. This phone call took place on a Friday. The following Thursday my brother was supposed to arrive so I could leave town for a much-needed week-long break. I had three business days to get this accomplished along with all the work I had to finish up at my job prior to leaving. Great, just what I needed. No pressure, no pressure at all!
I went to the Social Security office in downtown Seattle right at opening time on Monday. I waited in line and finally spoke to a customer service person. I had brought all the paperwork, including the signed original Power of Attorney forms, and explained the situation. The woman said that Social Security doesn’t recognize POA forms as being legally binding (WTF?). She still needed to speak to Grandma and offered to call her. I explained that we’d tried that before, but she thought it was a good idea anyway.
The results were worse, if anything. The customer service person was an older Philipina with a very strong accent. The chances of Grandma both hearing and understanding her were nil. The woman finally said to me that since Grandma was confused I had to bring her to the office in person before they could do anything for me. She also said she’d love to meet someone so old. This was cold comfort to me, as you can imagine. Trotting out Grandma as a curiosity when I am undergoing very real stress is not what I need to do.
She couldn’t make an appointment for us, we just had to bring her down and wait with everyone else. So…that was one morning completely wasted. The next day I had home health arrive early and I borrowed a wheelchair from one of the clinics at work and we got Grandma to the Federal Building right at opening time. The security guard tried to get Grandma to stand up to walk through the metal detector before I asked him if there was anything else they could do and whether he was going to catch her if she fell?
I understand the need for security at our federal buildings, but they need to hire some people with a little common sense. I wanted to ask if he also worked for TSA, but bit my tongue. We got her through security with a minimum of extra haggling and got to the Social Security Office right as they opened. I got Grandma to the window where we had the exact same conversation we’d attempted twice before on the phone.
Somehow, my answering the questions when Grandma was incapable was better once they could SEE her in front of them. We got everything worked out and I was named Grandma’s Payee (for Social Security, having a POA means nothing, but as Grandma’s Payee I am authorized to do anything on her behalf. Seems duplicative to me, but those are the rules).
I was assured that everything would be corrected in the system in two weeks and that we’d see a return to her normal payment schedule (with back payments) the following month. Disaster averted. I could at least now go on vacation knowing that things would be taken care of. Little did I know….
The following month started Phase 2 of bureaucratic hell. Her check was deposited…but it was a lower amount. Another round of phone calls to both SSA and DSHS. Hours on hold. Explanations given. Waiting. More assurances that it would be worked out “next month”, that it was just “the process”…
When her check was deposited in January for the lesser amount again I started the same process. This time, I got both her financial counselor and SSA on the phone at the same time. It seems that both systems were waiting on the other to trigger the correct payments…but since they BOTH were waiting for the other it was never going to happen without intervention.
After a lot of time and even more explanation on the phone (and the threat of having to take Grandma downtown again) we finally got it worked out. In February, she finally received her full Social Security deposit for the first time since October. We’re still owed about $300 in back payments, but I don’t have the energy to fight with it anymore and am afraid of what might happen if I try to resolve it. I don’t want to risk triggering another round of cancellations! Honestly, I’m willing to forgo the $300 in order to not have to deal with it anymore.
All of this leads me to wonder: How do people like Grandma deal with these situations if they don’t have a loved one to care for them? Luckily I was able to provide for her while we were sorting this out, but what if I hadn’t been able to? I sometimes think that the system is set up so that if you are TRULY helpless they get help for you, but if you have help they make you jump through all these hoops. I can’t imagine someone like Grandma having to navigate this system alone.
It also makes me think how truly broken our system is. If I simply put Grandma into a nursing home, the state/federal government would pay for all of her care, no questions asked, which would be FAR more expensive than having her continue to live with me. I don’t want to do that. I don’t think it would be good for her at this point and I know it would be more of a drain on the system.
You’d think that rather than creating hoops for caregivers to jump through, the system would incentivize people to care for their elders. I’m very lucky to have the flexibility in my current job to be able to attend to these details, but if I didn’t I’d actually be jeopardizing the very thing that makes this possible, my income.
One thing I will say about all of this, though…despite the system being broken and all of my criticisms of both DSHS and SSA, most of the people I’ve dealt with have been very helpful. This is especially true of DSHS. Everyone from her financial worker, to her social worker and even her home-health supervisor always ask how Norma is doing and do what they can to ease the way.
I owe much of it to Grandma’s age. I think it puts her in a special category where people don’t even question whether assistance is needed. It is assumed.
I guess we’re lucky in that way.
Oh Rob, I’m so sorry, and so sorry to hear about your Mom! Paul didn’t tell me that she had recently died. I know, the SSA is completely f’d up, it’s crazy. Unpaid family caregivers save the government billions of dollars and this is how we repay them – by giving them more problems. Hang in there; now that you’re the payee, it should make things easier for you, they’ll just ask you to fill out a periodic statement about what you’re doing with her money. Take care!
Thanks Joy. My Mom’s death is what precipitated Grandma’s move in with me. We moved Grandma here only a couple of months after Mom’s death so it’s little wonder that there was something left un-done! I’m glad that I’m the payee now…it definitely helps when calling SSA!