Another Day in the Life

Today I am feeling overwhelmed. I just do not know where to begin. I am not talking about where to begin with writing my blog for today. I am talking about where to begin on the list of Travis stuff I need to accomplish. And sooner than later.

Last week I had a phone interview with a representative from the Social Security Administration (SSA). Regarding Travis’s Supplemental Security Income (SSI). This interview is conducted annually. I answer their questions to update information so that SSA can complete a redetermination regarding Travis’s eligibility for SSI benefits. I received a summary document in the mail of the information that I provided.

The letter asks me to review the information to ensure that the representative recorded my statements correctly. During the review I see information dated back to 2016. Yes, Travis still has a live-in-aide. But not that one.

Looks like I need to make a call. And besides, in another document I received from SSA regarding Travis’s SSI, they have an incorrect amount listed for his income last month. I am required to report Travis’s income from the previous month by the 6th of the following month. I find that calling it in is the easiest method for me. And even though I called it in on December 2nd, this letter dated December 4th has the wrong amount.

Every single month I receive a letter from SSA listing Travis’s monthly income as $200. It is usually considerably less. Travis is on a schedule to work four hours per week. Minimum wage in Colorado is $11.10. So if the average month contained four work days he would make $177.60. But that does not account for the days that he calls in sick because he is having a rough mental health day. Or that he needs to take breaks to get through his shift. Those breaks are off the clock.

The point being that Travis’s income is usually much less than $200 per month. I have a theory. That the SSA office purposely puts in a higher amount to force you to call in the actual income. Because if you don’t, you will receive a lower benefit amount than you are supposed to receive. Which I am guessing would motivate most people to stay on track.

And then once you call it in, the SSA office sends out several pages of new information with your correct benefit amount. It does not matter that I call in his correct information earlier than the deadline. The information does not get entered into the system before the monthly letter gets sent out. This letter is called the “Notice of Planned Action”. Basically it states that the SSA plans to lower Travis’s SSI payment due to his estimated wages of $200 for the month.

Then after my income reporting phone call a new letter is sent. This is the “Change of Payment” notice. It says that the SSA plans to increase Travis’s SSI payment because his income has decreased.

I have a thought. What if the SSA waited until after the 10th to mail out the “Notice of Planned Action” letter? Individuals could report their income for the previous month by the 6th, and the SSA staff would have until the 10th to input the reported income into the system. And then the “Notice of Planned Action” would only go out to the individuals that actually did not report their income.

I wonder how much money could be saved by our government if they did not use all that extra paper and ink? And postage and sorting at the post office.

Travis would still receive the “Notice of Change in Payment” monthly. Because his income is a bit different each month.

I have to watch each month for the “Notice of Change in Payment” form. To make sure that it does get input. Last month I had to make a call to the SSA office because I did not see the notice and wanted to make sure that the SSA had processed my message left on voicemail. It did get missed. Resulting in the wrong amount of SSI benefit being paid. And a back payment having to be deposited. And another letter.

Which reminds me. Since I have to call anyway about my review of the redetermination summary, maybe I should make sure that the correct income amount has been input as well.

Just left a message with the SSA representative. Check.

As I was leaving my message I received a call from Travis. He has a nurse that comes by once a week on Mondays. He fills Travis’s medication box. This box has an alarm that goes off to remind Travis to take his medication and rotates to provide the medication. He called Travis to let him know that he was on his way to Travis’s house. Travis does not like being awakened in the morning.

If you know Travis, you already know that he is not a morning person. He is a night owl. His doctors have shared with him the importance of getting on a regular sleep cycle. And that it is best for our bodies and our mental health if we are awake during the day and sleep at night. I have had many conversations with him about this as well. Staying up late and sleeping late into the day is a habit that he shares with most of his tribe.

Which reminds me that I need to text his nurse and let him know that Travis missed his medication on Saturday. We ended up picking up Travis at his home on Friday night. He ended up spending the night with us on Saturday as well. I did not anticipate this. That is why that day’s dose is still in the box. Text sent. Check.

Which brings me to the next thing. Travis’s psychiatrist recently weaned him off one of his prescription medications. Travis has been pre-diabetic for years. He recently passed the threshold of being pre-diabetic and was diagnosed with Type II diabetes. The doctor thinks this could be a side effect of the medication. The doctor wanted to prescribe something different.

If you know us, or have been reading the blog faithfully, you already know that Travis has been prescribed many different pharmaceutical medications. Starting from early childhood. We have seen many different side effects. I did not want him prescribed something new until he was fully weaned off the current medication. Because it is extremely hard to tell if the behaviors we may see are as a result of coming off a current medication, or a result of starting a new medication.

The last week or so has been extremely difficult for Travis. And us. We are seeing some extreme behaviors that we have not seen for awhile. His mental health is deteriorating. I felt that the medication that he was on was doing a fairly good job of what I call, “smoothing out the rough edges”. So over the past several months I was reluctant to have the doctor make any changes. Of course I am worried about Travis’s physical health. But I am equally, if not more, worried about his mental health.

When Travis struggles with his mental health he goes to the same place. “I hate my life.” “I don’t want to be here.” “You and the world would be better off without me.” “Just let me go.” My belief is that this last statement is him asking for my permission to end it.

Travis has been talking about suicide since he was a young child. I used to tell him that, “Suicide is a permanent solution to a temporary problem”. But I don’t say that anymore. Because it is clear that his mental health issues are not going to be temporary.

Now I tell him that “Dying by suicide does not end the pain. It just passes it on to others”. He calls this emotional blackmail. Call it what you want, but I want you alive. You’re my son. And I love you very much.

So having to pick him up at his place on Friday night is, as I believe, a result of his medication no longer being in his system. Now I am sure that his behavior is a result of the weaning off of a medication. Now would be the time to try something new.

We talked with Travis several times this weekend about reaching out to his doctor. To try to come up with a solution. Travis thinks that medications numb him. So that he doesn’t feel anything. And he does want to feel. And we hear him. But does he want to feel like this?

So this morning I did a bit of research on a medication that the doctor had mentioned. Sometimes when you do research the things you learn can be scary. But so is watching what Travis is going through. Experiencing his meltdowns. Getting him through it.

I also made another more updated list of the medications we have tried. I sent an email to Travis’s psychiatrist asking him to call me. I want to see if he can squeeze Travis in for an appointment tomorrow. But I want to share what we (Tracy and I) have been experiencing with Travis from our perspective. Because it is different than Travis’s perspective. And although I attend Travis’s doctor’s appointments with him, it is difficult for me to get a word in edgewise. Especially uninterrupted.

And sometimes it is necessary for me to speak freely about concerns that I may have. If the doctor is able to give me a quick call, I can fill him in on those concerns. Email done. Check.

Next I sent Travis’s case manager at Foothills Gateway a text. Foothills Gateway is the Community Center Board in our county that oversees Travis’s State of Colorado Developmental Disability Waiver. It is her job to make sure that Travis’s needs are being met within the guidelines of the waiver through the state. One of the many things she does is attend Travis’s medication reviews. I asked her to call me.

She calls right away. Because she knows that I would not ask for a phone call unless it was important. I let her know that I emailed Travis’s psychiatrist to see if we can get him in tomorrow. She shares with me that the doctor leaves a 4pm slot open for emergencies and she will check to see if it is available. I also have paperwork for her that she needed me to sign. And shhhh. I have a Christmas gift for her. Hopefully she doesn’t read this blog until after we see her tomorrow. Make arrangements to see case manager tomorrow. Done. Check.

I decide I better keep Travis’s therapist in the loop.  I email her and ask if she can call me.  She also responds right away.  She is in sessions all day.  Is everything ok?  So I email her.  Want to confirm Travis’s appointment for Wednesday.  And see if I can join him this week.  Sometimes when he sees her he forgets to tell her about specific incidents.  Things that I think she could help him through.  If she only knew. 

And I ask her if she would be able to participate in a team meeting.  That would include his case manager from Foothills Gateway, myself, and a representative from the provider agency that provides his job coaching.

Because Travis is also struggling at work.  He works at a local business that sells jewelry.  They offer employment to individuals with intellectual disabilities.  My understanding is this business has a contract with the provider agency that provides the training and job coaching for the employees.  We were made aware of this position through Travis’s counselor at Department of Vocational Rehabilitation (DVR).  Our experience with DVR will, no doubt, be the subject of a future blog.

Ok, give me a second. I am going to send the team an email. And see if we can come up with a time to meet. After the first of the year. And see if Travis can take the next few weeks off. In hopes of getting him stabilized on a new medication. And when we meet we can put our heads together and determine if this job is actually a good fit for him. Or just adding to his struggle.  And I’m back. Email sent. Check.

Last Monday I took Travis to see his family practitioner.  Now that Travis has been diagnosed with diabetes we will need to be seeing him about every three months.  Which reminds me.  I need to make that appointment.  Done.  Check. 

So last Monday I took Travis to the doctor. I don’t know if Travis gave me a bug, or if we both picked it up at the doctor’s office. But I have been sick since. I finally feel like I am on the road to recovery. But I didn’t pick up the mail for a couple of days. As I was going through the mail I found two large envelopes from the Division of Disability Determination Services.

The letters are dated December 4th, 2019. I apparently have ten days to fill out the enclosed paperwork. I was supposed to have returned them by this past Saturday. Only I did not open it until yesterday. The 15th. There is no way they were in my mailbox for all of that time.

One of them is a Function Report I have to fill out for Travis, as Travis. Because he cannot read the questions, and he cannot write the answers. Twenty two questions. And the other is a Function Report - Third Party. Twenty five questions that I answer as me.

A few weeks ago I wrote about our experience applying for SSI for Travis. And how hard the process was. The Division of Disability Services performing a continuing disability review is feeling equally hard. In August I had to complete a fifteen page continuing disability review report. I updated information about Travis’s doctor, psychiatrist and therapist. The questionnaire was very detailed. Asked how often he saw his specialists. Had he furthered his education? Any new evaluations? Job training?

About a year ago DVR closed Travis’s file. After working with him for years. Because at a team meeting it was decided that Travis was unable to hold a community job at this time. Because he requires a one to one job coach to stay focused. And because of his mental health issues. DVR paid for an evaluation by a psychologist of their choice. DVR paid for six months of therapy from a therapist of their choice. This therapist was part of the team that decided to keep him in an enclave setting. An employment where all of the employees are individuals with disabilities. DVR’s goal was to help Travis find a meaningful position within the community. Those options for individuals with intellectual disabilities are limited.

Wouldn’t it be nice if all of these agencies communicated with each other? Once DVR closed their file we received a letter from SSA saying this could lead to a “Notice of Continuing Disability Review”. We didn’t choose to stop working with DVR. They chose to close the file. Should we have continued to put Travis into situations that he was not equipped to handle? Isn’t working in whatever setting a step toward becoming employable?

After DVR closed his file, Travis’s state disability waiver now pays for his one to one job coach. At about $55 per hour. If he is struggling in that setting how does anyone think he could work at a regular job setting with less support?

And Travis’s continuing disability is under review. (Deep Sigh) In my opinion this process could definitely use some streamlining.

Travis did get an appointment with his psychiatrist for 4pm tomorrow. So I will have to push the appointment I had for a previous commitment for something non Travis related back a bit later. Tuesdays are Travis Tuesday. Until around 4pm. We run his errands. I take him to Tae Kwon Do. We will be meeting his case manager to drop by some forms that she needed signed. We fill his gas tank. Oh yea, and on Wednesday I will go to therapy with him.

I guess I will be up tonight making sure to get the function reports completed.  So I can put them in the mail tomorrow.  They are already late. I had planned on completing them today.  But today got away from me.  And I am still in my pajamas. The upside is I am already ready for bed tonight. Another day in the life.

“Some days, she has no idea how she’ll do it…but every single day, it still gets done. - Author Unknown