Life’s Choices

Life would be so much easier if there was really audience participation – wouldn’t it? Then you could determine if you were making the best choice for your life by how the reaction you receive, and react accordingly.

I jest, yet I can’t help but feel that’s how life is. There is no end of well-meaning individuals who are quick to voice their opinion on what you should do with barely a glance at what your life entails or (seemingly) thoughts about possible long-term consequences.

Today my son and I saw a physician, to get the second opinion needed when filing for Guardianship. This has been an internal struggle since before my wife passed, with me on the side of supported decision making. Yet when I review the evidence before me in as dispassionate a view as possible (not cold, just trying to be impartial) – I think I’m fooling myself if I believe he is capable of understanding the complexities associated with some of the decisions adults make almost daily.

In some ways I envy my son his innocence, and wish the world were a different place. Somewhere I wouldn’t need to worry about someone taking advantage of his trusting nature, or not so rushed as to really take the time to make sure he understands exactly what he is agreeing to (he has a tendency to agree to please people).

As a widowed father of a son with disabilities it’s not just an academic exercise to contemplate what will happen when I’m gone. I think most parents have these thoughts, although I doubt they dwell on them to the extent I (and I’d guess many of my peers) do. I’m fully aware the choices I make today will affect him for his lifetime, not just mine. Shows, like the Good Doctor most recently, do little to reflect the realities parents and families face (purely my opinion).

These shows don’t display the struggles to communicate; the fights with insurance companies for adaptive and assistive technology; the stress-bred exhaustion and seemingly constant struggle against a bureaucracy and population who seem to want nothing more than to make services more restrictive or remove them altogether. These shows don’t show the impact MEDICAID and SSI have, they don’t touch on the fact families with children who have disabilities may spend more than 10x’s the national average to raise their child.

There is no “right” answer, life isn’t that black and white. It took me a long time to realize this, and if I’m being honest it’s something I still struggle with. Life’s not meant to be “fair”, but it should be equitable. The majority of families are doing the best they can, a fact I would encourage everyone to consider before being quick to judge because you see a meltdown in the store.

To my fellow families – the struggle is real. Know the decision you made today is the “right” one, because you made it with all the information available to you at the time. It’s pointless to second-guess yourself or listen to those who could’ve done it better. Continue putting your best foot forward, don’t give up. Contrary to how it may feel, you’re not alone.

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Improve Your $ Habits

I want to acknowledge James Clear, it’s his image I chose as cover art – and you can learn more about his ideas at his website https://jamesclear.com/three-steps-habit-change.

I’ve been thinking a lot about habits lately, as I’ve committed to improving my communication skills through the remainder of 2017. I understand this won’t happen on its own – I need to actively work on changing my behaviors while finding ways to reward myself until I don’t have to think about what I’m doing any longer.

Another impetus for this topic is client-driven, over the last several months I’ve met with clients who have poor financial habits; and from what I’ve seen this is more common than not. Individuals and families do the best they can, but often they haven’t been given the tools to develop good habits; or they’ve identified things they want to change and try to change too much – becoming overwhelmed and giving up.

In my opinion the “easiest” habit to create is one that requires little extra thought or action on your part. For saving money, I ask people to find $25 – $50/mth, and set it aside somewhere they won’t spend it – that could be in an envelope in your underwear drawer or an online bank account w/o an ATM card; it’s more important not to touch it than where you put it.

Need motivation, tie the money to something else you’re trying to do. For example, if you’re trying to lose weight pay yourself $5 or $10 every time you decline dessert. The money will reward you for following your diet, so you’ll become more likely to stick to it. And saving the money towards something you really want will reward you for your discipline. Win Win.

You can use these same tools with your children, to help them develop healthy saving habits young. I understand some may disagree with rewards, because then you may only be doing something because of what you get – and I want to acknowledge that argument. However, my belief is if I can get someone to work up to saving $400/mth, even if they are using $100 each month to reward themselves they’ve still set aside $300 more than they were before.

This is one idea, and certainly not the Holy Grail of personal finance. There are many resources available – blogs like Paula Pant’s “Afford Anything“; “Mr. Money Mustache”, and J. Money’s “Budgets are Sexy” to name just a few; and just as many or more podcasts.

The key is not trying to change everything. Start with one thing, focus on it until it becomes second nature and then move on to the next. Having an accountability partner (and I know I’ve said this before) can be a HUGE help. Celebrate your successes, and don’t beat yourself up too hard when there are bumps in the road – it happens. What I believe you will find as time goes on is you will notice the bumps less; because your success has achieved a life of its own.

 

Take the Long View

I’ve found it can be incredibly difficult to plan for the long term, with all the noise and distractions vying for your attention in the short term. Something always seems to come up, tempting you by its immediacy. It’s because of this I think it’s critical we have a deep understanding about the what, when and why of our long term goals.

A common example I’ve been helping people with is where they want to live when their child is older. Understandably they don’t want to move while the child is in school, because of the possible disruption it could create. However, if they are considering a move to another State they could be hurting themselves by waiting; because most, if not all, States have transitioning youth funds set aside for young adults leaving High School at 21. Waiver programs are designed to give students automatic head of the line privileges; but this will not apply to someone who moves into the State after High School – they will have to wait.

The “noise” is people with good intentions encouraging the parents to stay, reinforcing the parents’ belief it’s what’s best for the child. And it very well may be, but it should be weighed against the need for continuing services after High School. There is also fear of the unknown – how will my child react, what will the school be like, etc. It’s a lot to handle, especially if you have other children and/or are a single parent – you don’t have to do it alone; there are organizations and professionals who can help.

I’m using one example, focusing on a family who has a child with Special Needs making a move; but taking the long view is just as relevant when considering whether to buy or rent (a house), when to take social security, when to retire, etc. Take some time to yourself, away from distractions, and think about what you want and where you see yourself in 20 – 30 years. Then back into it, how are you going to get there?

Write it down – it’s not meant to be set in stone, but having a written record will help you when those crises occur and you need to make an immediate decision. In the heat of the moment it’s unreasonable to expect yourself to be able to think about the future; but you should absolutely be able to look at what you had written and use it to help ground you. You may not change your mind about what needs to be done, but you’re no longer operating purely on emotion. Practice with routine decisions, so you build the habit and muscle memory kicks in when the poop hits the fan. I’m here if you need/want help.

Living Independently

As I continue to work on enrolling my son in Social Security, and completing the necessary paperwork with the VA and DFAS (military pay system), I can’t help but wonder what he’s going to do when I’m gone – and will this all be enough. Obviously we can’t plan for every eventuality, so we do our best to address as much as possible.

When we’ve finished applying for his benefits, my next focus will be on where he will live. There are many organizations throughout the country offering Residential facilities, and with Group Homes no longer authorized it’s a safe bet these homes will not have more than (4) residents; but we’ve (my son and I) decided not to pursue this route – because he doesn’t want to have a roommate.

There are also organizations creating communities of individuals with a specific diagnosis, I believe the most common is Autism. Although I think this is an incredible opportunity for some families, for me personally it does not meet the full inclusion experience I want for my son.

So what does this leave? For us, we’re looking at purchasing a multi-family home (duplex). While I’m alive, and able, I will work with a property management company to rent out the other unit (I don’t like doing maintenance). When I’m gone, either I will have paid off the mortgage or the life insurance will settle the debt; either way ownership of the property will transfer to my son’s Special Needs Trust, and the Trustee will work with the property management company.

In my opinion, the advantage to this is the property will pay for itself after I’m gone. The Trustee will have the authority to increase rent, evict tenants, etc; and the property management company will ensure the property is well maintained. Living in the house prior to me passing will allow us to develop an understanding of what the household expenses are; which will allow me to flesh out a reasonable budget for the Trustee to follow.

If you have a child, or sibling, you’re caring for and you haven’t put any thought into where they will live after you’re gone please use this as a siren call to start planning. There is no one-size fits all solution, it really boils down to what the individual wants/is capable of and your financial situation. The longer you wait, the more difficult it will become – but it’s only too late if you pass away before you do something; because then it falls into the hands of the State. If you’re not sure what to do, reach out and ask.

Hydrocephalus Association

Odds are if you haven’t been affected by Hydrocephalus, you’ve never heard of the Hydrocephalus Association; but for those whose lives it affects, it can have significant impact. It’s my hope this blog will pique your curiosity, and get the conversation started. Everything I’m referencing comes from the website  http://www.hydroassoc.org/; unless otherwise cited.

The Hydrocephalus Association offers a host of information about hydrocephalus on their website, so I’m not going to dive too deep. But at a surface level, I think it’s important to understand there are many ways one can develop hydrocephalus – according to stats I’ve read there are over One MILLION people in the US alone living with hydrocephalus.

Who They Are 

The Hydrocephalus Association serves as the primary nexus for research on hydrocephalus, a condition defined by an abnormal, excessive accumulation of cerebrospinal fluid (CSF) within the cavities of the brain (from website). They are committed to finding a cure to hydrocephalus, and to that end fund research programs and host conferences and workshops.

My introduction to hydrocephalus came at a seminar I presented about financial planning for families with Special Needs. In an almost off-hand fashion a mom informed me her daughter “only” had 13 brain surgeries before her 6th birthday. I may be mistaken on the exact numbers, but it shook me because it was a double digit number.

What They Do 

The Hydrocephalus Association uses a 3-pronged approach to accomplish their mission of eliminating hydrocephalus – they connect families with each other, forming communities offering support and resources; they work on clearing misconceptions and deepening the understanding of what hydrocephalus is, and isn’t; and funding research in biomarkers and genetics (to name a few directions of the research funding).

What Else Should I Know

According to NIH’s National Institute of Neurological Disorders and Stroke, hydrocephalus is a condition caused by excessive accumulation of cerebrospinal fluid (CSF) in the brain; and it may be congenital (present at birth) or acquired (develops at time of birth, or later). It may also be “communicating” – CSF blocked after it exits ventricles; or “non-communicating” – CSF blocked along one or more of the narrow passages connecting the narrow passages connecting the ventricles. The only treatment I was able to uncover is the installation of a shunt, basically a drain inserted into the skull to remove the excess fluid.

For more information, I’ve included a link to NIH’s fact sheet. Personally, I was surprised to learn it’s 30x’s more common than Cystic Fibrosis, because I’m much more familiar with Cystic Fibrosis.

Disclaimer

I am not an employee of the Hydrocephalus Association, and any errors noted are my own. If I have misrepresented, or misstated anything please provide constructive feedback so I may make the appropriate change(s). All opinions and views are my own.

The Struggle is Real

Lately I’ve been on a kick to help people motivate themselves to maintain momentum, if moving forward; or overcome inertia if they’re at a crossroads; and today I want to share a few of my current challenges and strategies.

My son turned 18 recently – leading me to start the process for his SSI, updating DFAS so he maintains eligibility for my military pension and TRICARE, and updating the VA to keep my disability payments at their current level (with a dependent). Given his disabilities I’m also applying for Guardianship. As you may be able to imagine (or perhaps can relate having been through already), this in itself can feel like a full time job.

The first challenge I’ve come across is how to help my son receive his full SSI benefit and the adult disabled child benefit (survivor benefit) from my wife. If both go to traditional savings or checking accounts, the SSI will be offset by the other benefit. So my first thought was his ABLE account, because the assets are not considered when determining SSI eligibility.

Unfortunately, his ABLE account is not equipped to receive electronic deposits – so Strike 1. No problem, I need a 1st Party Special Needs Trust anyway, for the military’s Survivor Benefit Plan; I’ll just send the adult disabled benefit there. My intent was to complete ALL the estate documents at once – 1st & 3rd party SNT’s, Guardianship, DPOA, etc – and I was on a great trajectory.

Was being the operative word. I was able to get the Physician’s letter, no problem. However, I also need a Social Worker letter – and because he’s never received services (DDA “future need”) – he hasn’t worked with a Social Worker. His teacher gave me a couple options, and although neither was viable I appreciate her time and effort. So now we’re in a sort of limbo while I figure this piece out.

Rather than let the whole process stall, I’ve decided to move forward with everything else, and finish the Guardianship as I’m able. I’m also working on engaging the DDA again, since my son is an adult and they should be able to help me with the transition from High School at age 21.

The last piece on my plate (as far as I’m aware) is following up with DORS again – getting my son employment assistance. I’ve been working on this for (2)  years, since he turned 16 – it had been my hope to have him working summers; getting used to the routines necessary to be successful post-high school. That hasn’t materialized, yet, but I will redouble my efforts towards the end of this school year.

All of this is meant only to show I understand how frustrating and time consuming it can be. And I get it can be overwhelming, especially if it’s all taken into consideration at once. The best thing I think anyone can do is pick one item and work it until the next steps are out of your control; rinse and repeat. Not sure how to prioritize, ask for help. I started a company – Special Needs Navigator – just for this purpose, and it’s my belief there are other resources like this throughout the country; although it may take some work to find them.

Don’t give up, as the image I selected shows success could be the next step you take. If you’re feeling overwhelmed, stop and take a breath. Help yourself, establish routines to give yourself a mental/emotional recharge – the pause and refresh will help you identify alternatives you may otherwise miss. Keep charging – you’ve got this!

Adversity – Furnace or Forge

Life can be difficult and is often unfair. I don’t think anyone would argue, and I’m willing to bet many of us have felt like throwing our hands in the air and saying “enough is enough – I quit”. The difference is what happens at this point – do you actually give up, consumed by the fires; or do you push through, overcoming the situation/circumstance with new tools and beliefs?

I’ve done both, it’s taken me many years to recognize there is always another side to adversity – it’s just how long it’s going to take you to get through. The more you do to help yourself when things are going well, the shorter (generally) the impact will last. The trick, in my opinion, is understanding (1) you’re not alone, and (2) you have more tools than you may be giving yourself credit for.

Develop habits when things are going well, so you don’t need to think about “how” to do something when life throws you a curve ball. Commit to sitting down with the most positive person you know at least twice a month, when you are at the bottom of a hole they can extend a rope; and if it’s a habit/routine they will know may be up if you miss one or two appointments.

Financially, commit to setting aside at least $25 each week in an online savings account – where you don’t have ready access. This creates the habit of spending, but it also gives you a lifeline when those “oh craps” occur. If you can afford to do more, then build up gradually to what you’re comfortable setting aside – but don’t start too big. The intent is to not notice it, so you will continue.

When bad things happen look for correlations to how you are feeling. At some point in the past you more than likely felt very similar, even if it was to a lesser degree. How did you overcome it then? Use those tools, adapting as necessary to fit your current circumstance.

Some changes cannot be undone. I will never get my wife back, nor will my son’s Autism go away. That doesn’t mean we can’t, or shouldn’t, live our lives to the fullest. We’ve adapted, and so can you. Do your best to never let circumstances identify who you are. Continue to grow, seek new experiences and don’t fear failure. And as I’ve said so often before – quit trying to be a one-person show. Instead be the conductor and surround yourself with people who have achieved what you’re aiming for and have similar values and ethics.