Struggling with Social Security? You’re Not Alone – So Are the Employees

Let me start out by saying I am not a criminal. Well, except, there was that one time I got a speeding ticket (for those who have driven with me, I know how hard that is for you to believe).

Then there were those teen years when I TP’d a few houses of friends.  That’s not a crime, right?  If it is, certainly the statute of limitations has run out (she asks hopefully).

Oh, well, um, there was that time I distributed anti-military spending flyers at the Open House of an Air Force Base and was quickly escorted into a room full of very serious military police to “talk.” 

That scared the crap out of me but I was not arrested – just told to leave and not return.  No problem!  Thank you for your time!  Sorry to bother you! 

Phew.  (Thank goodness I didn’t TP the military base.)

Nope, I have not been arrested.  I may be a heart-on-my-sleeve liberal but I am definitely not a criminal. (We won't discuss my college years where I went a little off the rails; still, no arrests).

For this (overall) rule-abiding citizen, the Social Security Administration agency recently sure had a way to make me feel like I was trying to pull some sort of fast one.  

After caring for Robert for a couple of years, I applied to become his Representative Payee.  Since the Social Security Administration doesn’t recognize a Durable Power of Attorney, it was the best way for me to avoid sitting for hours in a waiting room with Robert to change an address.  (It didn’t matter if he was asleep as I did this as long as the agent could verify he was there).

As Robert’s Representative Payee, I can call the local office on Robert’s behalf and they will actually talk to me (and Robert can sleep at home)!  I can also go online to take care of many tasks on his behalf.

Such as completing my first Representative Payee report.  It’s a very simple form with just a few questions and is available online so it really couldn’t be any easier.  The expenses are lumped into three main categories and the Representative Payee calculates what they’ve spent within each category over a period of one year.  This was easy to calculate since I keep all receipts for anything spent by Robert or on behalf of Robert and have a detailed Excel spreadsheet with all of his expenses for each month.

I did have a question, however, about the money I’ve saved for him.  Robert has a Special Needs Trust and some of his money is saved in that trust for his future medical needs.  The Social Security Administration website didn’t answer my questions so I needed to talk to an actual person.

After calling the toll free number, listening to several automated options, choosing the wrong one and being unable to undo what I just chose, calling back, choosing the right option, holding for at least twenty minutes, I was finally talking to a real live person! 

Please, please, please do not let us get disconnected, I pleaded in my head.

After verifying I was who I said I was and verifying Robert’s information, I was able to ask my question. How do I indicate on the form that Robert has a Special Needs Trust and a checking account and that some of his money has been saved in these accounts? 

“What do you mean, you’ve “saved” money in his accounts?”

My brother has money left over at the end of the month and I save it for him.

“Ma’am.  His money should be spent for his benefit. You should not have any money left over to save.”

Okay.  Well, I do. He’s well dressed, he is never without briefs or 7-up or reading glasses and I have some money left over.  I’m sorry?

There’s a spot for “savings” on the form so this can’t be that unusual.  My question is about differentiating the Special Needs Trust account and Robert’s checking account.  How do I account for that on the form?

“Ma’am.  I know for a fact you shouldn’t have any money left over.”

Okay.  Look.  I have called the Social Security office several times over the last 18 months and emailed the original rep that set me up as the Representative Payee to confirm Robert was getting the correct amount of money.  I actually thought he was getting more than he should but each time I called, the representatives looked up the account, verified all the information and told me he was getting the correct amount.  I've talked to New Home and they said I have to call Social Security.  I've called Medi-Cal and they confirmed they had Robert's correct address and his correct living situation. 

So I have money left over that I save for his future medical needs or housing or medication that Medi-Cal won’t pay for. 

“Ma’am.  You need to go into your local office with your question. You should not have any money to save.  Do you know where that is, ma’am?”

Yes. I spent many hours there before becoming the Representative Payee which I thought was going to save me time by being able to resolve issues over the phone!

This woman’s attitude was rude and accusatory from the start of our conversation.  She had me so discombobulated, I didn’t even realize until after we hung up that she hadn’t even bothered to look at Robert’s account to verify he was getting the correct amount. 

I was dreading going into the local office so tried my original rep again.  The phone number she gave me had been disconnected.  Great.

After finding the new number and trying my luck with whoever answered the phone (after being on hold for quite some time, of course), I was able to speak to a local representative who answered my question about the two accounts and how to account for them on the form. 

I asked him to confirm the amount Robert is to receive each month since I was concerned I was either going to jail or having to repay thousands of dollars. He said the type of home Robert lives in had been verified by one of their agents and he assured me Robert was getting the correct amount of money each month between Social Security and SSI.

He was even nice about it!

My first Representative Payee form has now been completed online and my stomach has released most of the knots it was in worrying that I was doing something wrong.

The conflicting information given by different representatives is astounding to me and still leaves me with nagging doubts about who is correct.  Given the few experiences I’ve had with Social Security, it is really no wonder the agency has such a terrible reputation. 

How are the disabled or the elderly and their caregivers supposed to be able to navigate the system when the employees can’t even do so!  The system is unnecessarily complicated and needs to be simplified.  At a minimum, representatives need to be uniformly trained so the users can be given the same (correct) answer when talking to any representative.

Now can someone please help me down from this soapbox before the MPs show up?

Never Take “No” For an Answer

We found the Golden Ticket! We found the Golden Ticket!

When the Building & Planning Department told my Hubby garage conversions weren’t allowed in our city unless we constructed a paved car port elsewhere on our property (not in front of our house, but on the side where there’s actually no room for two cars) and then told him variances were denied “99.9 percent” of the time (even after Hubby explained the conversion was for his disabled brother-in-law, I felt defeated. My eyes welled up, not believing that after carefully weighing the decision to move Robert into our home, we would be stopped from doing so by a nonsensical city code.

The tears lasted all of 30 seconds and were quickly replaced with anger and a call to action. How can we get around this? What is the best way to be in that tiny, tiny percentage to successfully lobby for a variance? Certainly they can’t make me almost double the cost of a garage conversion with their paved carport requirements (not to mention it being physically impossible to squeeze in a carport where they insist it be located)!

I talked to a few of the attorneys I work with and they came up with a variety of ways to design the garage and our side yard to meet the requirements (leaving Robert with little room) and suggested ways to ask for the variance. The best suggestion of all was simple: start with the basics. What code are they referencing to deny us a variance? The code the clerk handed Hubby wasn’t explanation enough for me.

I found the Rancho Cordova Municipal Code and scoured it from the beginning. Finally, I found the code addressing “Reasonable Accommodation” which provides a process for requesting “reasonable accommodation for persons with disabilities seeking equal access to housing under the Federal Fair Housing Act and the California Fair Employment and Housing Act in the application of zoning laws.”

Hallelujah! “Reasonable” is mandated by code! From what I can tell, this means we do not have to apply for a variance, we can just apply for the permit to convert the garage without jumping through the hoops of building a second garage. This is the common sense provision I was looking for.

Robert’s Renovation – Update

Many of you know I am not a fan of nonsensical rules whether it’s from New Home, our healthcare system or government agencies. I love simplicity and although creating both a bathroom and bedroom out of a garage isn’t completely simple, it seemed easily doable. After all, millions of garages must have been converted into living spaces over the years.

Apparently, not always with the proper permit.

Okay, okay. I have a confession to make before going any further. In the interest of full disclosure, my Hubby and his brothers actually constructed a wall in the garage a few years ago when Hubby thought having space for an office in which to do homework for him and the kids (he’s in school too) sounded like a good idea (and no, like thousands of other families, we didn’t get the proper permit for it). The “room” was created but without finished flooring, ventilation or heating and air. There were, maybe, two months out of the year comfortable enough to be in the room so homework was back inside the house being done at the dining room table. The “room” evolved into a work out space (for about a minute) to its current use as a storage space for all puzzles and games and crafts and party supplies and old furniture and (oh, yeah) exercise equipment that I knew ONE DAY I would use again.

Finishing the room and adding a bathroom seemed like a natural solution when we decided to move Robert in with us (not to mention an excellent excuse to sell off that exercise equipment). We don’t have a shower or bedroom downstairs in our house and Robert can’t manage stairs so this seemed like such a simple solution. How hard could it be to finish the room by adding a/c, plumbing and cable?

Apparently, pretty darn difficult if you live in the city of Rancho Cordova, California.

Hubby decided to help out the contractor by investigating the permit fees for garage conversions. He was quickly told garage conversions are not permitted unless there is also covered parking provided for two cars.

Gee, that sounds a lot like my garage. That I’m trying to convert.

Making Sense of Healthcare Coverage

Let me start off by saying I am very grateful for the government healthcare assistance Robert receives. Really I am. Sometimes, though, I am left scratching my head about coverage decisions!

1. Vision care. When Robert first moved to a care facility in Sacramento, he needed a primary doctor and I also thought it would be a great idea to get his eyes checked and for him to see a dentist. I was fairly confident he hadn’t seen either in quite some time so wanted to take care of this for him. The primary doctor was priority number one so arranged that using the doctor affiliated with his first care facility (he now has a new doctor that is affiliated with New Home and will have yet another one once he moves in with me). Eyes and teeth were next but before the eye appointment, I bought Robert reading glasses because he was squinting while working on his word search puzzles. Can’t have that! Sat him down on the seat of his walker at CVS, gave him several pairs to try on to find the right magnification as well as a style he actually liked. Hours later, he was able to read his puzzle book without squinting! The vision appointment was made but then something happened and I needed to change it to the following month.

Well, vision coverage wasn’t covered the next month (it must have been a new budget year). Ugh. So much for that idea! At least Robert had the reading glasses and was able to do his puzzles. Once Robert moved to New Home, vision coverage was restored and his eyes were checked (and the doctor confirmed the reading glasses we bought were sufficient). When Robert moves in with me, vision check ups are back to not being covered. Even though, it would seem, the state is saving money by having Robert live with a family member.

Can someone explain the logic of this to me, please?

Diving into the Deep End

No sense burying the lead: We have decided to move Robert into our house. (Shh! It’s a secret right now so don’t tell New Home or Robert).

Ack! Phew! Goodness Gracious! Wow! What am I doing?? Sigh . . .

Moving Robert into our house has created a mini-explosion of emotion inside of my head and heart. This was not a decision made lightly but I know this is the right decision. (I’m not telling Robert just yet because he has no concept of time and he’ll think he’s moving in tomorrow).

I have been on this path of caregiving with Robert for a few years now (he was able to live fairly independently before 2008). Moving him in with me and my family seems to be the culmination of a natural progression of me caring for him but the decision was not taken lightly.

A while back, I decided to move Robert out of New Home and began searching for another home for him. I wanted to take my time to find the best place for him and got a couple of referrals from people who are familiar with clients at these homes. I researched the homes and checked on any citations and fines they may have had. I “Googled” them to see if they had been in the news for any problems at their facility. I checked the ownership of the homes to be sure the corporation that runs Robert’s New Home wasn’t involved in these homes.

I just couldn’t bring myself to see the homes.

Tools for Your Caregiving Tool Belt – Navigating Government Programs

We’ve added Education and Navigating Care Facilities & In Home Care to your caregiving tool belt (again, thanks to Denise Brown who gives many caregivers plenty of tools for their caregiving tool belt and is the kind soul behind caregiving.com – a wonderful online support community).

At some point in the caregiving experience, you will most likely need to step into a government office. Before doing so, take a deep breath (or a few) and throw all expectations of common sense out the window.

This is not said out of mean-spiritedness or because I am perpetuating stereotypes without basis. There are many, many helpful people who work at the various government agencies who I cannot blame for the difficulty in navigating these agencies. It is my personal experience that the policies and procedures are so convoluted that two people from the same agency, working in the same office may give you two different answers to the same question!

I’m not here to change the government (although it is on my to-do list) but will help you navigate through a few government agencies as painlessly as possible. (If you’d like to read an admittedly long, yet honest personal experience of dealing with a government agency, my first ever blog post details it here).

The reason contacting a government agency may be necessary is for help in covering the extraordinary expense of caregiving. Depending on personal circumstances, this may or may not be necessary and your loved one may not qualify but it is worth looking into. Caregiving is expensive!