Gerry (00:12):
Hey, family member, let's talk about alternatives to worry on Our Parallel Paths.

(00:19):
Hello and welcome to Season Five of Our Parallel Paths: A Future for My Loved One With a Disability... And For Me. I'm your host, Gerry, Dr. Geralyn Arango-Deeley. And this podcast is about just what the title says, the parallel paths of family members and their loved ones with intellectual disabilities. I'm a parent myself, and I always have questions. Our parallel paths is about nurturing and supporting ourselves as we nurture and support our loved ones with intellectual disabilities. Our roles as family members are ever-changing, ever evolving alongside our loved ones. So, there's more than one path, more than one future to talk about. That's why we're here. I hope the stories and perspectives of my podcast guests and me give you hope, information, and ideas for your path.

(01:17):
So, I'm calling today's episode five ways I need to respond to worry, aka, when my train feels like it's going off the tracks. I have a question. Are you worried these days? I'm worried these days. I don't like to worry, or at least to call this feeling that I'm having worry because worry feels like such a useless emotion and, and worry seems so often, (laughs) to be more about my self-image than any actual problem. Um, as I started my notes for this episode, I thought, okay, let me look up some quotes about worry, you know, to give the episode context and to kind of back up my thoughts about worry as kind of useless.

(02:10):
And so, I did find a few quotes and, and here are some quotes from my, wiser minds than my own. Worry does not empty tomorrow of its sorrow, it empties today of its strength, Corey Ten Boom. Worrying is like a rocking chair. It gives you something to do, but it gets you nowhere. Uh, that's by Glenn Turner, the, who also said fake it till you make it, which I also sometimes do. John Lubbock said, "A day of worry is more exhausting than a week of work." Dan Zadra, author and communications mentor said, "Worry is a misuse of imagination." And in the words of John Locke, "What worries you, masters you." You don't notice? They all seem to boil down to that idea that worry is kind of a waste of our time. And it's better that we should use our energy to do something about what's going on rather than to spend the energy worrying about it because worrying does not help.

(03:22):
This concept will always be hard for me. So, if I find a different word for worry, if I find a way to rephrase the feeling I'm having right now, that I'm going to try to call something else, it would be one, I am concerned about or two, I want to do something about or three, I need to learn more about, because any of those paraphrases are a better use of my energy than actually worrying. And each of these phrases is to some degree, a call to action rather than a potential pity party. And I love me, a pity party, but let's not do that anymore, huh? So, this podcast episode is about what many of the, those of us on the parallel path may be worrying about. But let's turn a, worry away from ourselves and out into problem solving.

(04:25):
This episode is what many of us on the parallel path (1) are concerned about; (2) want to do something about; and (3) what many of us need to learn more about. And in this case, for this episode, it's how to be knowledgeable about the funding our loved ones receive because of their disability. Now, this is not unreasonable to "worry about" - to worry about our loved one's benefits because you know that they really can help both my adult child, loved one and me to have access, to have opportunities, to have a life and a life that is parallel and not always so much time in the overlap zone, you know? We know that we are as family to a greater or lesser extent, the voice. We are, to a greater or lesser extent, often the front line of defense. The representative for someone who cannot necessarily advocate for themselves to the degree that funding advocacy requires.

(05:36):
And I'll be honest, this level of advocacy is a huge challenge for my Nic. So, I am in this role. In my experience, all those Ss, SSI, SSD, SSDAC SSDI, and then of course, Medicaid and Medicare and what's called Medicaid waiver in Pennsylvania, they are all somewhat intimidating or hugely intimidating, depending on the day, to feel like you ever understand deeply enough. They are, to a greater or a lesser extent, interconnected in our loved one's life. But in my experience, these systems don't talk to one another. Has that been your experience too? But these systems and understanding them are absolutely necessary one, to be concerned about, two, to perhaps do something about, and certainly three, to learn more about because it is a better use of our energy than the ultimately futile act of worrying.

(06:49):
We here at my house, are kind of information junkies. We ask a lot of questions and we do love the hunt for answers. It always feels to me like seeing the same information come out of different mouths. The same information come out of different websites, the same information come out of different friends who are also on the path, different media sources, it, it feels like it makes the information more likely to be true, at least for today, more likely to be helpful, at least for now. In statistical terms, (laughs) it would be called valid and reliable. And yet, in these uncertain times where maybe just trying not to drown in the fear of what could happen next if I don't know enough. My husband, Michael, YouTube information junkie supreme and very smart guy, has found some YouTube channels, and I'm gonna share them with you, um, at the end of the podcast that have been helpful to us.

(07:50):
They're not fancy, but they are deeply informative and they actually take questions. I'm even hoping to have one of them on a future podcast episode. Fingers crossed. We here at my house, and this is what inspired this episode, had or, or are still having (laughs) a very close call last week with Nic's Pennsylvania waiver funding. I spent three days trying not to worry, but rather to be concerned about, like I said, to want to do something about and to want to learn about. And even though the worst, I hope is over, I can't say that it's true beyond the shadow of a doubt. And the futile emotion of worry is something I pers- personally have to constantly swat back in order to move ahead. And boy, worry doesn't like to get swatted.

(08:43):
Anyway, the way it all started, innocently enough, was that Nic received a bill from his primary care physician's office. And it was, it was a little questionable, a bit unusually, and it seemed to have been largely unpaid. I called the physician's office to ask about what insurance they billed, but Nic's Medicaid was not among them. I was told they didn't respond. So, I made a call to the company where I assumed he had his Medicaid insurance all these years. And the number on the back of the card now congratulates me for making, winning a personal safety device. [inaudible 00:09:23]. I called another number for the same insurance, the customer service number on the website, and they said, Nic doesn't have this insurance and he hasn't had it in five years. So, what, what, who I wonder has been paying his secondary coverage all this time. I'm still looking. Did I not notice a problem because, maybe 'cause Nic was on my husband's insurance until he turned 26, which was last March of, you know, '24, um, maybe, I don't know, starting to get nervous now starting to W-O-R-R... Nope, nope, nope.

(10:00):
Anyway, the person on the line said, "Call Medicaid." So, I called Medicaid and that person at Medicaid said, "Call the county assistant's office." As the runaround begins. I said, "Should I go online and check?" And she said, "No. Call them." I groaned 'cause, oi. And then I called. No one answered, but I left a message with my caseworker. In the meantime, curiosity of course got the better of me and feeling hungry for information, I got online to look at the website where all of Nic's information lives. The website where I had recently uploaded Medicaid waiver renewal information, there's that word, Medicaid, um, where I had uploaded all the things that they ask for, all those proof ofs, proof of income, proof of banks, you know, bank accounts, things like that. Um, and I was so proud of myself because I met the deadline of January 31st. I was three days early. Feeling like a boss for being three days early. But when I got there, I learned that Nic's case had been closed and effective in seven business days, it was over.

(11:17):
So, my lessons. Lesson learned number one. Scream if you must. I lost my mind a bit at this point. This was my worry being more, kind of more about me at this point. This was the worry before acting. It's the natural response to a scary question in scary times. And my scary question was, what's gonna happen if my son loses his Medicaid benefits? I know that answer. I know that everything that we have built through that funding, living in his own home with support, having a job in the community with the supports he needed, having support staff to help him embrace new experiences, stay healthy, get additional supports like speech therapy, they would all be gone. So, I screamed, you know? And I screamed, but I did all this. I did everything I was supposed to do. I did it, I did it. I slammed my hand on the table. Um, I worried I had a pity party complete with party hats streamers. And I probably scared my husband quite a bit. I'm usually pretty calm.

(12:35):
Lesson learned number two. After screaming, which you must do if you need to, get focused and get on the phone. I had to get busy. It was time to articulate the concern to myself and to anyone I thought could help me. It was time to learn more about what the heck was going on. It was time to do something about what was going on, or at least to try to. I didn't know who to call first, so I called everyone my supports coordination organization. You met the director Jessica Fenton last season in one of our episodes. Give that episode a listen if you haven't already. She knows so much. My benefits counselor, the primary physician's office, the county assistant's office. And when the county assistant's office didn't answer again, I called the State Department of Human Services and I asked them after a 40-minute wait on the phone, the same question, what the heck?

(13:51):
Lesson learned number three. Get over the guilt right now. This really isn't about me, but it is to an extent. I think this get over the guilt lesson is kind of a universal parent lesson, amped up when your loved one has a disability and you have to speak for them to the powers that be because they cannot always clearly articulate the problem. I can barely articulate the problem sometimes. Further complicating speaking for my disabled adult son, you may know this already, that once someone turns 18, no one can speak for them without permission. I can't be Nic's mouthpiece. I get it. Our loved ones are vulnerable. But yeeh, despite getting power of attorney for just about everything, not every entity accepts my power of attorney. And sometimes I forget who I've shared it with. I, the bank didn't share it, Nic's bank account, I had to do my own power of attorney there. And one more, it's coming. I actually carry a copy of power of attorney in my car just in case.

(15:08):
The other place that I learned about power of attorney, a little sidebar here, I learned that the social security office will accept only a form of their own as power of attorney and it's form SSA-1696. And I only found out about that because the person who happened to be at the window that day that I had to drop something off told me when she said, "Are you his rep payee?" And I said, "No." That's how I learned it. So, you know, keep asking questions everybody. Anyway, Nic's problem is about Nic, but since I'm the one who must so often speak for him, even if he's right here in the room with me, it also becomes my problem. And I all too often take Nic's problems and sometimes his sister's problems too, as personal failures. Now, would I allow you to feel this way? Would I allow you to take your loved one's problems as your personal failures? No, I would not let you go there. I would tell you not to go there. You did not cause the problem.

(16:20):
You are doing the best you can with what you know. And the more you know, the better you'll do. So, give yourself some grace and I would allow you to scream. Lesson learned number four. Be prepared to be persistent. I can tell you now, three weeks into this issue, three weeks after starting to write notes for this podcast episode, we are still not quite there. We are still sleuthing over what was gone wrong. 
The first thing I learned was that Nic's waiver funding was to be canceled on a few days' notice because the bank statement was wrong. Yeah, the bank statement was wrong. Nobody told me. They just threatened to shut the funding down. My caseworker only returned the call when the state sent in a, quote, unquote, ticket that required a response within a certain number of business days. You know what I did though? I submitted a new bank statement just like they asked for, or actually, they didn't ask for until the 11th hour. I wish I'd have found out in a more efficient way in one of those, you know, 21st century methods like email or a phone call.

(17:49):
The letter telling me that it was going to be cut showed up four days before the actual going dark of the whole thing. It almost felt like we were set up to fail, but we did not fail. The problem of Nic's waiver funding being cut was solved for now at least. Answers regarding the unpaid doctor bill are still on deck. Lesson five. It ain't over till it's over. And it's kind of never really over, is it? Still haven't figured out how Nic could have a Medicaid waiver, but not Medicaid insurance. We were not able to keep him on my husband's insurance once he turned 26 because most people drop off. But I would say that if your child is turning 26, don't assume they have to drop coverage. We were not so lucky. But others we know were, and you may be able to keep your loved one on your plan because of their disability. At least, you know what? Take the time to get a yes or no. Ask.

(19:01):
After several more calls, we learned that Nic does have Medicaid, but he needs to be enrolled in an insurance part after being dropped five years ago when he got the waiver. And yeah, I don't get it either. This week's calls will be responding to a message that I got from the county assistant's office with a different name this time, who can hopefully get Nic enrolled in medical coverage to go along with his primary insurance, which is now Medicare. We are not out of the woods yet. And I paid the rather high primary care physician's bill, especially because he has an appointment this Friday and I don't wanna get the stink eye when we get there. Um, after all of this, wish me luck, wish me information, wish me stamina. This is why we do have to take care of ourselves. We need the strength for this path.

(20:03):
So, I wanna wrap up with the two YouTube resources I mentioned at the beginning of the episode that we at my house are finding helpful. One is called All Things Disability [All Things Social Security] with social security disability attorney, Stephanie Joy, and she's on YouTube. She posts about social security disability claim issues like almost every day. Stephanie is based in New Jersey but she represents claimants in all 50 states. And she'll answer your questions in her videos. Michael actually got answered by name once, 15 minutes of fame, um, by Stephanie. Another helpful resource is from Dr. Ed Weir. Dr. Weir, W-E-I-R is among other things, a retired social security administration district manager and a former family services specialist for the Department of Public Welfare. So, again, another robust collection of informative videos on his site and the opportunity to get your own personal questions answered too. Dr. Weir does live Q&A daily at 6:00 PM Eastern Time.

(21:15):
So, folks, let's find another way to address the futile emotion of worry. I'm gonna keep on working on it. I'm gonna try to say instead I'm concerned about, number one or number two, I want to do something about or number three, I need to learn more about, fill in the blanks. I'm trying to. And so, listeners, thank you so much for spending time with me today on today's episode of Our Parallel Paths. I hope you'll like and follow our podcast, share it with family and friends. And I really hope you'll return to listen and learn from more stories of people like you and me and our loved one with a disability on our Parallel Paths. You're not alone and I would love to hear from you. Feel free to comment, to rate the podcast, to like, to subscribe and to join our Facebook group and our Instagram as well. See you next time. Take care.