With Just One Click . . .

It is unbelievable to me how much stress one inflexible bureaucrat can create. 

My head pounds.

My stomach turns.

My mind races.

My breath has been taken away by a young woman at the Social Security office who has somehow decided Robert no longer qualifies for SSI or Medi-Cal.

She even insinuated I was lying to her.

I stared at her in disbelief.

I am not sure how this happened. All I know is it felt like I had been hit by a mac truck when walking out of the Social Security office. 

I really don’t know where to begin or how to cut this short. 

Bear with me.

When I took over Robert’s care at the end of 2008, he was getting Social Security and SSI benefits as well as Medi-Cal (the California equivalent of Medicaid).

My very first blog post was about the difficulties in changing Robert’s address from one county to another. (Be warned - it is long. This was written before I realized a blog post shouldn’t be as long as a mini-book.)

Things have not changed (with Social Security or my lengthy blog posts).

When Robert first moved to Sacramento, he was in a Skilled Nursing Facility while he recovered from an infection.  Once he was better, he moved into a Residential Care Facility for the Elderly (an Assisted Living Facility) under a waiver program.  He then moved into New (now old) Home.

With each move, I notified all the involved agencies: Social Security, SSI and Medi-Cal. 

Robert’s Social Security and SSI benefits were always adjusted depending on what type of facility he lived in.  His Medi-Cal benefits automatically renewed because he was on SSI.

I became his Representative Payee through Social Security so I could make changes on his behalf and not have to drag the poor guy into the Social Security offices.  I thought this would be an efficient way of dealing with Social Security while avoiding long waits.

After Robert moved into New (now old) Home, his Social Security payments seemed to be too much. Medi-Cal was covering the cost of the Home but still they sent what seemed to me, more money than he needed.

I made sure Robert had everything he needed and wanted but there was money left over each month. I called (several times) to verify the amount Robert should be getting.  Each time, I was told it was the correct amount.

When completing the first year report as the Representative Payee, I called to ask how to account for the savings.  I talked to one person who acted like I was a criminal for saving money. I then talked to the local office who again reassured me the amount was correct and guided me on how to complete the form.  

Call me cynical but it didn’t seem odd to me that the government would pay an amount more than was needed yet discourage people from saving it. However, I didn’t think I should spend the money unnecessarily.  After all, we were considering moving Robert in with us and if there was extra money we could use that for home modifications to accommodate Robert.

In the back of my mind, I also thought that if they were actually overpaying Robert I certainly didn’t want all that money spent. I assumed if there was an error they would eventually want the money back.

I sent in the form and didn’t hear anything about it.

Recently, I completed my second report.  On the form, there is a question about whether or not the consumer had moved within that time period.

Yes! Finally, Robert moved in with us!!  Goodbye, New (now old) Home!! Hello, actual home!

I answered the question affirmatively (although there wasn’t a spot for all those exclamation points).

Again, I accounted for the savings.

Soon after electronically filing the form, I got a call saying I needed to go into the Social Security office to make the address change.

This made no sense to me.  I already made the address change.  In fact, the woman at Social Security that I spoke to in mid-March said she would type up a note and send it to the local office so I wouldn’t have to physically go into the office.  She was such a sweetheart, I talked with her supervisor to give her kudos.

They wanted to see me so I made an appointment and gathered all my paperwork beforehand.  I was anxious about the appointment because I still worried they were overpaying Robert. 

Before leaving work for the appointment, I even joked with my best friend that she’d have to bail me out of Social Security jail.

The woman I met with was no-nonsense.  I tried being friendly while she typed my information into the computer but she didn’t smile or respond. She asked questions about our living arrangements (centering on whether or not Robert ate with us or bought his own food). 

Let’s be clear: the Rocky Road ice cream is Robert’s!

I told her I wasn’t sure why I had to come in because of my conversation with the rep in March and her telling me I wouldn’t have to go into the local office.

Ms. Bureaucrat said, “There’s no record of you ever calling Social Security.” Was that smugness? An accusation?

What?  That’s impossible. I told her who I talked with and what number I called.

She said, “Ma'am, I don’t know Darlene.”

Oh for heaven’s sake! Of course you don’t know Darlene – there’s probably a million people employed by Social Security!  

Did I call the right number?

“Ma’am, that number is for the WHOOOOLE United States.” (Complete with hand gestures to indicate just how big the United States is in case I didn’t know.)

Wow.  She’s not only a bureaucrat but she’s condescending.

I repeated that there have to be notes in Robert’s account that I’ve called.  I explained I called numerous times.

She just stared at me.

She then asked about the savings. I told her I had saved what was not spent each month which added up over the year. I explained that it was put in Robert’s Special Needs Trust so that neither he nor I have access to it because it was over the $2,000 threshold. I told her that it was going to be used for home improvement for Robert.

She repeated that there shouldn’t be any savings and that part of that money was to pay for his housing.  I explained the housing was paid for by his Regional Center or Medi-Cal.

She said that is not possible. Board and Care homes are not covered by Medi-Cal.

Um, well, he lived there for a couple of years and, trust me, I would have heard if they weren’t getting paid.

I told her I could contact Robert’s Regional Center rep and she said she would call him if I had the number.  

To her surprise, I produced it.

She called and left a message while I sat across from her.

She then said because Robert was getting more than the allowable threshold, Robert’s SSI would stop.  I actually didn’t really care about this.  After all, at this point, he’s only getting $35 a month from SSI.  That’s fine.

“And he will lose his Medi-Cal.”

Whoa!

He can’t lose his Medi-cal.  His medical expenses are outrageous between doctor visits, prescriptions, hospital stays and briefs. I don’t care if he loses all of his monetary benefits but he can’t lose the medical.

“Well, he still has Medicare. Plus, you can apply for Medi-Cal through the county.”

She then went on to tell me we would have to pay back the overpayment.

By this time, I was not only stunned but also confused.

Why in the world is he losing his SSI and Medi-Cal?  He has always had these. He’s been disabled since he was a child. 

I don’t understand. She couldn’t/wouldn’t explain to me why he was losing his benefits other than Social Security is paying him more than the threshold. I asked why the amount wasn’t adjusted as it has been in the past so he isn’t over the threshold.

She didn’t answer but jumped up in her seat and said, “Oh, I might be able to stop the SSI in August.” 

With one click she stopped his SSI and Medi-Cal.  She turned to me and said, “I couldn’t stop it in August but it is stopped effective September 1.”

The disappointment in her voice was noticeable.  I think she expected me to tell her how sad I was for her.

With one click (and one very unhelpful bureaucrat), Robert has lost his Medi-Cal benefits.

I will have to appeal her determination once I officially get it while I simultaneously apply for Medi-Cal through the county.

More to come as the situation develops.

For now, I need to take something for my headache.

This Did Not Happen

Because Robert lives in a care facility paid for by his Medi-Cal coverage, he is only allowed to stay overnight somewhere else 73 nights in a year.  That may seem like a lot until you count up weekends, holidays, vacations plus the occasional doctor visit that happens late in the day or early in the morning where an overnight visit would be more convenient or when someone is sick and might be better cared for by family. 

I am not asking the state to pay for Robert to stay at my house overnight but do want the care facility to be paid.  I also don’t want to have to pay the care facility close to $200 a night for taking him out of the facility on night 74+. 

Call me crazy but that seems a bit excessive.  I mean, there are a lot of nice spas/hotels charging a comparable rate and I guarantee you Robert is not getting spa service over here at our house.  He might get Rocky Road ice cream or chocolate Frappuccinos from Starbucks but spa service – um, no.  Nobody is leaving fancy chocolates on his pillow. (Quick note to hubby: I wouldn’t mind fancy chocolates on my pillow!).

Apparently, the state doesn’t care about the actual days – just overnight visits.  I could, theoretically, pick Robert up first thing in the morning and return him to his care facility a minute before midnight and it wouldn’t count toward the 73 days.  Considering he lives 45 minutes away (one way), this solution isn’t that appealing to me. 

Although, for purposes of this story, that’s exactly what happened. 

Oh wait.  First, you are getting sleepy.  Very sleepy.  Look at this shiny object.  You are getting sleepy. 

Now repeat after me:  Robert did not stay at our house overnight this week more than one night. 

Now that we’re clear about what did or did not happen, and I can probably take the 5^th if ever asked about it and I know where to find a good lawyer, I’m pretty confident I can continue with the story.

I picked Robert up at his facility on Saturday and it was immediately clear he had a cold.  By Sunday morning, he was running a fever but it went away by mid-day (letting him sleep all morning and loading him up on Tylenol helped).  We had a family party to attend and, although we were late, we got there just in time for lunch and a gift exchange.  To Robert, this was perfect timing.

Once we were back home, I got Robert settled on the couch to relax with a box of tissues and a Frappuccino.  We had several recordings of Jeopardy so he couldn’t be happier.  While he watched television (and dozed), my daughter and I tackled the outdoor Christmas decorations!  Richard came out to figure out the most efficient way to hook up several dozen extension cords (you think I’m kidding) and after just a couple of hours, Phase I was complete!

Robert continued to feel the effects of a cold and didn’t eat a lot at dinner.  By Monday morning, he was again running a fever and coughing quite a bit.  Being the paranoid sister that I am (hey, his hospital stay in May for pneumonia and sepsis has me a little wary of colds), I took the day off and had him rest and see a doctor.  She ordered a chest x-ray mainly to appease me which turned out to be clear. 

 

When Robert has a cold, he gets very wobbly and it’s as if his legs turn to Jell-O. He moves slow to begin with but when he’s sick his usual two hour routine in the morning of bathing, dressing, eating and grooming (all done independently) become impossible tasks without help.  It takes me a few minutes to know whether or not I should step in to help because I don’t want to step on his independence but once I do, he’s always very appreciative.

 

“Thank you for putting my right sock on.”

“Thank you for putting my left sock on.”
“Thank you for putting my right shoe on.”

You get the idea.  He may be sick, but he’s polite.

He woke up without a fever on Tuesday (yay! We’re on the mend!).  He went to Day Program but Hubby picked him up early so he wouldn’t overdo things.  Robert and Richard spent the afternoon together while I was at work.  Robert watching Jeopardy and relaxing and Richard washing all of his bedding (Now that I think about it, I guess I should be leaving Hubby chocolates on his pillow). 

I came home a bit early that day and made potato soup for dinner.  Robert told me how delicious it was but me, still bitter about how he raved about Richard’s pancakes, jokingly said, “Just say that 10 more times and I’ll be happy.”

Looking straight at me, he repeated, “This is delicious.  This is delicious.”

Rachel said, “I think he’s counting.”

Richard said, “He’s up to four.”

He continued: “This is delicious.”

“FIVE,” we all shouted.

“This is delicious.”

“SIX.”

“This is delicious.”

“SEVEN.”

On it went until we shouted “TEN” and broke into cheers! 

Robert grinned from ear to ear.  After dinner, he went to bed a little early and seemed well enough on Wednesday to last a whole day at Day Program.  He was still wobbly but Day Program is flexible enough that Robert could enjoy a quiet activity for the day.  Just a movie and quiet time and then back to his care facility where he can stay until this weekend. 

They know he’s been sick and are keeping an extra eye on him and (hopefully) helping him get around until his legs get their strength back and his balance returns.

It’s this sort of collaborative care and communication with his other caregivers that I wished the state was concerned about instead of how many overnight visits one client may (or may not) have.  After all, isn’t this sort of collaboration what keeps people healthier?  Out of hospitals?  Happier?  Saving the state money?

I’d love for the system to allow more flexibility but, in the meantime, if someone asks if Robert stayed with us for a few extra nights this week, in true Sergeant Shultz fashion my answer will be a resounding:

“I know nothing.” 

Oh, you can wake up out of your trance now.  Just remember, this was all a dream and this did not happen.

73 Days

“Seventy-three days per calendar year for developmentally disabled recipients” are what Robert gets when he lives in an Intermediate Care Facility for the Disabled (aka, New Home) in California. Robert’s home is reimbursed through the state Medicaid program (Medi-Cal) and they will lose funding for the days he is not at the home if he exceeds 73 overnight visits. 

This was unknown to me until after day 51 and New Home called to tell me we were on track to exceed the limit this year.  What?  There’s a limit? I was incensed but not surprised there would be such a rule.

Counting last weekend, we’re at 53 and it’s not yet August.  With holidays and doctor appointments (when I sometimes keep him overnight), we’re on track to be about 50 days short.

I was so disappointed when I learned of this and immediately worried about Robert’s reaction. Robert loves coming over!  I understand New Home has to get paid and understand there are very specific rules about Medi-Cal funding.  I'm still disappointed.

I don’t remember reading anything about a limit on the amount of overnight visits so double-checked the original “move-in” documents.  There’s a passing reference to overnight visits and checking how many days a client is allowed to have but nothing about a limit of 73 overnights (it is in the Medi-Cal regulations, however).

Again, this is another example of New Home not being used to family involvement.  They deserve credit for at least telling me about this rule before we hit 73 days in October (right before more doctor appointments and the holidays).

Yes, take note.  That’s me giving New Home credit for something.

This is disappointing but it isn’t something I can fix with conversations with varying levels of supervisors at New Home. Because I love to dissect rules to figure out where they originated, I have tried to figure out how the magic number 73 was decided.  The best I can guess is the people writing the regulations allowed one overnight per weekend, plus several days for holidays and a vacation and maybe a birthday. 

This year, Robert has spent Saturday and Sunday nights with my family and either my husband or I have dropped him off at Day Program Monday morning.  I love visiting with the Day Program staff on Monday mornings and getting updates on how Robert is doing. 

My husband, Robert and I have a great routine on Monday mornings (hubby makes coffee, breakfast and his lunch while I get Robert washed up and ready for the day) and although it’s taken months, we’ve been able to speed Robert up to a reasonable pace for a workday.

When dropping him off at Program, I remind Robert I will pick him up the following Saturday.  He still calls every Friday to ask if I’m going to pick him up the next day.  I don’t know if he’s actually forgotten or if he’s just worried about my memory and thinks I might forget him. 

Robert clearly enjoys coming over to our house even if nothing is planned although there’s usually some mix of a barbeque, a haircut, movie, card games, word search puzzles or just relaxing watching his favorite television shows. 

There’s always family around to talk to, dogs and cats to be amused by and Rocky Road ice cream to eat. 

The benefits of having Robert over for two nights (three, if it’s a holiday weekend) have been enormous.  Robert loves his weekends here (although I’m not above thinking he’s here just for the ice cream).

I will check to see if there’s a way to pay the per diem rate for any days we go over the allotted amount (it pays to re-read the original move-in documents) but, I suspect, we will be limited to the 73 day rule. 

I haven’t told Robert yet because I’d rather talk to him about it in person and want him to see it won’t be that much different.  We can still pick him up on Saturday and keep him through dinner on Sunday.  He can get ready for bed here and then be driven back to New Home in time for bedtime. 

We’re losing the weekly connection I have with Day Program on Monday mornings but they are so good about communicating that I’m not worried about my relationship with them.

We’re going to make the most of this 73 day limit as there’s still a lot that can be done in 73 days. 

We’re still getting six haircuts and mustache trims a year (well, Robert is; I don’t have a mustache in case you were wondering);

That still allows catching up on 260 episodes of Jeopardy (Robert doesn’t mind repeats);

That’s 73 chocolate shakes and cheeseburgers;

Three word search puzzle books;

At least 30 black, clicky pens;

Close to 292 times of petting Sassy, our Toy Pomeranian, and telling me how cute she is;

Most importantly, it’s 146 scoops of Rocky Road ice cream.

I think we can make this work.