Reality Check

A day navigating the system

Photo by Catgirlmutant on Unsplash

I recently spent the day with our son A who lives in supported housing in the Bay Area and today’s post is about that trip. If you haven’t tried to help someone with behavioral health challenges negotiate “the system” you may not have any idea just how time consuming and frustrating a process that can be. I thought it would be interesting to recount my day in part because it features some of the players who populate the landscape adjacent to the behavioral health system and that you may know little or nothing about. Since I am a well-informed helper my experience was probably both more and less frustrating than yours might be in a similar situation.

I traveled to the Bay Area by train and BART because parking in my son’s neighborhood in the Tenderloin is impossible on weekdays. Also, the commute by car is often longer than taking the train and BART. But this meant I was on foot unless I wanted to rely on a ride-share service to travel less than three blocks from the BART station to my son’s apartment. I did not so I was hoofing it. By the end of the day I had probably walked three miles and climbed about twelve flights of stairs. So, the first requirement of a helper is that they be fit enough to make the journey and climb all those stairs.

The second requirement of a helper is that they know when to shout. Communicating with our son is always a challenge. He cannot keep a phone for more than a few days at a time and we have long since stopped buying them for him. One of the things I was bringing him was a second-hand tablet that he could use for Wi-Fi calling. He surprised us last year with his ability to hold onto a tablet for a much longer period than he ever held onto a phone. But he dropped the second-hand tablet he had acquired on his own out the fifth floor window of his apartment several months ago. We encouraged him to buy another but he said he couldn’t afford to replace it. In the interim, we had to rely on the building social worker to convey messages, a chancy way to communicate. We could not ship him the tablet (or anything else) because we could not rely on his being available to receive it, even with advance notice. That’s because time/day/date is often a fuzzy concept for him. As my tale will demonstrate more than once.

He had started calling us using a friend’s phone last month and we set up the day and time I would come see him in advance. We confirmed it with him several times including the day before I was coming: Monday at 12:30 p.m.

I arrived at his building at 12:25 and was informed by the front desk staff that no one knew where he was. She told me several people were looking for him but hadn’t been able to find him so far that morning. I sighed. This was looking like it was going to turn into my worst case scenario: a completely wasted trip. But, I know him, and so I went up to his studio apartment and rang the bell. When there was no response, I knocked and called his name. Our son relies on marijuana, alcohol, and meth to get him through his days and this has some predictable consequences. One of them is that he will go like a busy bee for a couple of days high on meth and then crash and sleep for a day or more. The marijuana also makes him sleepy. So, powered by a bit of impatience and annoyance, I banged on his door and shouted his name. Twice.

My second try was greeted with a sleepy “Huh, yeah, yeah…who’s there?” from inside the studio. Apparently no one else had banged on his door or shouted his name loud enough that morning. “It’s me, Mom,” I hollered. “Let me in.”

It took three or four minutes before his door opened. I was pleasantly surprised to see that he was pretty clean, if unshaven for several days, and that he didn’t seem to be high. “Sorry,” he said. “I was asleep.”

I greeted him and cleared a place to sit in the tiny, crowded space. He has a hospital bed, one mid-sized coffee table with a TV on it, one small chest of drawers and a shelving unit above that, a tiny kitchenette, a large walk-in closet with some drawer units we had bought him, and an accessible bathroom. He has one chair in his studio apartment and it does triple duty as a shelf, a chair, and a coat rack. Our son relies on a power wheelchair for mobility due to his severe congenital bone disorder. He has never walked and is about three feet tall. He is susceptible to fractures and has steel rods in the long bones of his legs to keep them from developing severe, life-threatening fractures. His arms and legs are visibly deformed and, even when he’s got a coat on, you can tell he’s significantly disabled. At least, I always thought that was the case until I met his payee. But that comes later.

Shortly after I sat down, his In Home Supportive Services (IHSS) worker and his Cal Aim Enhanced Care Management (ECM) case manager showed up. IHSS provides services to keep people in their homes who would otherwise have to be in an institution of some kind. His worker provides A’s personal care, and does his cleaning, shopping, and laundry. The ECM case manager provides Medi-Cal case management services that are intended to support high utilizers (people who go to ER’s and hospitals a lot) with behavioral health needs in getting and staying stable and out of ER’s and hospitals. I was not aware that A had a case manager until I met her. I was surprised because, as far as I knew, A had not been to the hospital or ER recently. But I was not going to question it. Anyone who could help A manage daily life was a welcome member of the team. Turns out I may have been jumping to an unwarranted conclusion there.

The third requirement of a helper is that they are patient and able to tolerate repetition, ignorance, and rudeness. While his worker put away his clean clothes, his case manager Ellie told him she’d been looking for him. She told me she had been hoping to meet me and that she was working on getting A a new bed. A’s electric hospital bed had been broken for at least ten months that we knew of. We had tried to help him and the 24 hour on-call medical staff in the building get him a new bed after Medi-Cal approved it but his inability to communicate by phone and show up reliably had defeated us all. So he was left with a bed that didn’t work. Fortunately, it was stuck in the flat down position so he was able to transfer on and off the bed without help.

Photo by Bret Kavanaugh on Unsplash

“That’s great,” I told her. She then informed me she was working on getting him a trapeze for the bed. I looked at her dumbfounded. This would not be the first time I felt this way that day. There was no way that A could use a trapeze. A trapeze, in this context, is a metal device that hangs over the bed and that someone can use to pull themselves up from a flat position into a sitting position. Not only would he not be able to reach it, he would break his arms trying to use it. I was disappointed but not really surprised that I had to educate her about this. “He can’t use a trapeze,” I told her. “He’ll break his arms trying. He needs an electric bed.”

“Oh,” she said. “Are you sure?”

“Yes,” I said. “Did you ask A about it?”

“No,” she said.

That told me a lot about her skills and training. “He can’t use one. Regarding the bed, we tried to help him get a bed last year. It was approved and the medical supply company ordered it but they couldn’t deliver it because no one could reach A because he didn’t have a phone.”

“You should buy him a phone,” Ellie said.

I decided she must not have been working with people like our son for very long. And that she had a lot of nerve.

“We don’t buy A phones,” I told her. “He loses them or gives them away or they are stolen from him. It’s a phone-a-month club with him and we stopped buying him phones years ago.”

“Well, he needs a phone and you really should buy him one.”

I stared at her. “We do not buy A phones,” I told her again. I was getting annoyed with this woman and we’d only been talking for five minutes. Not a good sign.

“Well, then you should get him an Obama phone,” she told me.

Obama phones, in case you don’t know about them, are “free” phones that people on Medi-Cal may be able to get by showing their ID and Medi-Cal card to a provider. You may have seen the little stands on street corners in poor neighborhoods. The phones are pretty simple but will do the most important things you need a phone to do these days: text and call. As far as I know, they will not stream movies and I’m not sure about emails but, hey, they’re free.

Photo by Rob Hampson on Unsplash

I took a breath for patience, and replied, “He can’t get an Obama phone. That would require an ID and Medi-Cal card and he doesn’t have those.”

“Why don’t you help him with that?” she asked.

Clearly, this woman had little to no experience with folks like A. “You know how he can’t keep a phone?” I asked. “Well, he can’t keep an ID or Medi-Cal card either. We stopped helping A get things he can’t keep track of. It’s pointless.” I was suddenly conscious of my 42-year-old son sitting there listening to this conversation and got truly ticked off at this woman at that point. I should have had the good sense to make her go out in the corridor to have this conversation but I had felt ambushed. Next time, I told myself.

“But,” I said,” I’ve brought him a tablet that he can use for Wi-Fi calling. We were just getting it set up.”

“I need to go,” Ellie said to A. “I will come back next week to take you to the doctor so we can get you a new bed.”

“Okay,” said A, fiddling with the tablet.

“When is a good time for me to come?” she asked him.

“Any time,” said A.

“How about next Tuesday? Can you check your calendar?” she said.

“Just come whenever you want. I’ll be around,” said A.

I rolled my eyes and interrupted.

“A, what time does your worker get here in the morning?”

“9 o’clock,” he said.

“And what time does she usually leave?”

“11,” he said. The comings and goings of his worker are the only thing that orients him in time most days. Otherwise, he has no idea what time it is.

I turned to Ellie. “Come between 9 and 11 and he might be here. If he doesn’t answer the door, bang on it loudly and shout his name. He was here this morning. He was just asleep.”

“Oh, what a good idea,” said Ellie. “So, I’ll see you Tuesday,” she told A.

“Okay,” said A, “See you tomorrow.”

“No, I can’t come every day. I will come next week, on Tuesday, at 11.”

“Okay,” said A and waved at her as she walked out the door.

The fourth requirement of a helper is that they be somewhat tech savvy. After she left, A and I worked on getting the tablet set up. He can’t manage most technological tasks so I added the phone app and Garage Band and a couple other apps to the tablet and made sure he could work it for phone calls. I also found and plugged in the base to his Lifeline signaling device. He wears a button that he can use to call for help. Unfortunately, he can’t keep the base plugged in and charged so I am getting regular emails and phone calls from the alarm company to plug his base in or test the line. It worked great for the first few months he had it but, like many things with A, what works great at first soon stops working.

Photo by Henry Ascroft on Unsplash

Once we had the tablet set up we went to see A’s payee. Social Security requires that A and many other people with intellectual and behavioral health disabilities have a payee. A payee handles the money. They pay the person’s bills, account for the money to Social Security, and hand over cash if there’s any left after the bills are paid. A has an institutional payee. We do not serve as his payee. I encourage most families to avoid becoming their loved one’s payee. It’s almost guaranteed to pit you against each other. Instead of a congenial, helpful relationship you end up with one that is adversarial. Institutional payees are generally competent and trustworthy but I was about to get a lesson in their limitations, or at the least the limitations of the particular worker assigned to A’s case who was working for A’s payee.

The fifth requirement of a helper is that they are well-informed and willing to stand their ground. A is a Disabled Adult Child. He’s been disabled his whole life and on Supplemental Security Income (SSI) from the start. SSI is a welfare program to provide below-poverty level income to people with disabilities and the elderly. But, because A is a Disabled Adult Child who was disabled before the age of 22, when his birth mom (my wife) retired and went on Social Security, A should have started getting benefits based on his mother’s earnings record instead of SSI. My wife had started drawing social security last year and as far as we could tell, Social Security had not made the switch. They wouldn’t talk to us about it because we’re not A’s payee. My efforts to get his payee’s phone number from A had been fruitless so I was eager to go with A to see his payee.

We walked the block to his payee’s office and waited a little bit. Then a woman named Sylvia came and got A. I asked to speak with her and she took us to a little office off the main reception room. I told her about A being a Disabled Adult Child and how he should be getting several hundred dollars more a month than he seemed to be getting.

“He can’t get her benefits unless she dies,” Sylvia told me.

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“While it’s true that’s one way he can get benefits, he is also entitled to them when she retires or becomes disabled.” I said.

“No,” she said, “I’m sure it’s only when she dies.” She crossed her arms and stared at me.

“I’m afraid you might be misinformed,” I said in a calm voice. It’s a joy when you get a competent, effective person embedded within social service organizations. This clearly wasn’t going to be one of those times. “He became disabled before the age of 22 and he qualifies for Social Security benefits.”

She took a new tack. “He will have to prove he’s disabled,” she said.

I gawked at her. A said, “I’m disabled. I’ve always been disabled,” just as amazed as I was at her statement.

“A has a congenital bone disorder. He’s been disabled since birth.” I tried to keep my incredulity out of my voice.

“Well, he’ll have to give Social Security his medical records to prove it.”

“His condition automatically qualifies him for disability,” I informed her. “I have no doubt he will be able to prove his disability. But there should be no reason for that since he is currently on SSI for disability.”

Sylvia hadn’t uncrossed her arms. Her expression was stony. “I’ll have to talk to my supervisor,” she announced and left.

She returned ten minutes later and told us her supervisor was gone for the day. Then she informed me that she had remembered that his mother had to get the money from Social Security and give it to him and that they couldn’t do anything about that. She said she knew this because it had happened with another family and the parents had refused to give the money to the child and there hadn’t been anything they could do.

“No,” I told her. “His mother will not receive the money. It will go straight to him, just like his SSI does.”

She stared at me with a stubborn look on her face.

“How about if I write it down for you and you can talk to your supervisor about it tomorrow?” I said.

“Okay,” she said and handed me the stub from A’s check. I wrote our contact information and a brief description of the problem and gave it back to her. She said she would talk to her supervisor about it.

Photo by Christine Siracusa on Unsplash

The sixth requirement of a helper is to know when to quit. We left the payee’s office and I took A to dinner at the Mexican restaurant down the street. Back at his building we ran into his social worker. This was a new guy and we exchanged phone numbers. I told him about the Disabled Adult Child thing and he said he would follow up on it.

It had been a long day. I bid A goodbye and trudged to the BART station. I was glad to be leaving town. I would have to trust to the fates and the good will of the people I’d encountered to help A get his bed and his money. I was not hopeful, unfortunately. But they might surprise me.

Have you had similar experiences? Does your loved one have a payee? How is that going? I’d love to hear from you if you have a minute to post a comment.