Your Plan Isn’t Our Plan

I’m a Financial Planner, I help people create a Roadmap for their financial future. In the years since I started this journey I’ve had one fact reinforced more than any other – families like mine, having a child whose disability means they will likely never be truly independent, have additional considerations others will (thankfully) likely never have to think about. But this means we cannot, and should not, think our path will mirror anyone else’s.

SSI and Medicaid are benefits your child may be entitled to, and when they turn 18 the parents’ assets are no longer considered when doing the means testing. The child may also qualify for SNAP (food stamps), even if the parents’ are making 6 figure salaries. Even if a child is going to be in school until 21 (some states), they are eligible as adults at 18. I cannot stress enough – these are not benefits for the parent, they are for the child. And I encourage my clients to apply as soon as possible because if something were to happen to the parent(s), who is going to help the child(ren) get their benefits?

When to take Social Security could affect your child – through the Adult Disabled Child benefit. This could affect the amount of life insurance parents’ need to purchase, because it should absolutely be considered when determining how much the child(ren) will need to support their lifestyle. Another consideration is health insurance and pensions, in some cases (like the military and Federal government), children with significant disabilities may be eligible for health insurance beyond age 26 and a portion of the parent’s pension(s).

When discussing how much risk to take with investments, consideration must be given to how long your child(ren) will live. If they do not have a disability that may be expected to shorten their lifespan, there is no reason not to plan for them to live into their 90’s or beyond. Some families rely on their investments to offset expenses for their children in retirement, so need this money to at least keep up with inflation. Others want to pass the money to their children, so consideration should be given about RMD’s for survivors (even Roth IRA’s have RMD requirements for survivors).

These are just a few of the considerations families like mine think about – it can get even more involved when consideration needs to be given to hiring staff (caregivers/support) and/or therapies. Don’t make these decisions based on what your neighbors or friends suggest, especially if they are not in similar circumstances. And although I know it can be overwhelming, the worst thing you can do is nothing at all.


Alone Time Isn’t Selfish

My son is now an adult, although as things currently appear he will never be truly “independent”. I struggle with this daily, not only because I want him to have an enriched and successful life; but because I want my independence. I catch myself feeling guilty, and I remind myself I’m only human – it’s how we react to what we feel that matters.

In my routine I’ve carved out a chunk of time in the morning to be “alone”; my son sleeps in so I start my day between 3 and 3:30 am – even on weekends. I’ve found this time gives me some of what I need, an opportunity to pursue my passions (reading, education and when it’s warm, hiking/biking) and puts me in a place more accepting of his stimming and presence.

Maybe this sounds cold to some, perhaps there are those who have never longed for absolute solitude – if even for only a few hours. But this is how I recharge – my chosen profession often wipes me out. I consider myself lucky, because my son is a low-key roommate (better, I think, than I was at his age) – makes himself dinner most nights, picks up after himself, etc. But I still long for the day when it’s just me; or maybe it’s the choice of being alone I long for – the end result is the same.

I’ve made peace with how I feel and I make a conscious effort to balance “me” time and spending quality time with my son. I feel “me” time is an absolute must – for ANYONE. Give your brain an opportunity to “turn off”, pursue hobbies or passions just because you want to (as opposed to keeping someone else entertained).

I don’t think this is selfish, I think it’s an important part of self-care. I like to think of myself as a bucket – I can only let others add so much before it overflows, at some point I need to pour a little out to make room. Quiet and solitude are how I empty my bucket, for others it may be surrounding themselves with friends and adult entertainment (cards, watching a football game, etc).

The key is not feeling guilty when you do it, otherwise I don’t think you achieve the full benefit. Look into Respite programs, or maybe you have friends you can “swap” with – alternate an evening of care to give each other a break. It doesn’t have to be super complicated, it could be as simple as your spouse encouraging you to go watch a movie or something.

Don’t Let Life Get Away

As a parent of a child with disabilities sometimes I feel like I’ve blinked and years have gone by. I can’t speak to it being the same for parents of children without disabilities, because I only have my son. My time in the military was similar, looking back I feel I wasted many weekends when I could’ve been out doing something by choosing to stay in my barracks room and play video games.

I feel it’s too easy to tell ourselves we’ll get to “it”, whatever “it” is for you. We make excuses or “promise” ourselves “next weekend” or “next year”; but all too frequently the “next” never occurs. Instead work or other sources of stress win, capturing our attention and stealing our most precious and irreplaceable commodity – time.

I think I’m getting better about this, I’m much more intentional about putting things on my calendar. I’m proud of my biggest change, buying a subscription to a local theater (musicals) every December – ensuring I will attend at least (4) performances because I won’t “waste” my money by not attending.

It feels like this is what it’s come to – we need to “trick” ourselves. Yes, we need to care and be there for our children; but, and this is HUGE, we also need to care for ourselves. When we don’t give ourselves an opportunity to breathe, I believe we are robbing our children of the opportunity to get the most from us – because we’re too tired/stressed (or other adjective of your choice).

I can hear the arguments, I’ve made them myself – “it’s too difficult/expensive to get child care”, “what would I do”, “what if X happens”, etc. All valid concerns, but not insurmountable when you truly believe it’s in your child’s best interests to have a parent who can be present.

As always I recommend starting small – booking a 2 week cruise to the Bahamas is not what I’m suggesting. Instead, start with a real “date” night – even if it’s only running out for 30 mins to get a burger. Make the most of this time by being with each other; or, if you’re a single parent like me, by just relaxing. Don’t look at e-mail or try to “catch up” on laundry or work. Start training your brain to have fun again.

Non-Profit Board Membership

This month, rather than highlighting a specific non-profit, I’m going to share why I believe Non-Profit Board membership isn’t just for the wealthy. I want to encourage “regular” people to share their knowledge, experience and skills with organizations supporting what’s important to them. Yes, non-profits need donors to fund their mission – but they also need the support of people who believe in them and will tirelessly share their story.

What Can You Do

First, decide if you want to support a non-profit – not everyone is at a place in their life where they can (or should) be philanthropic. We all have a set amount of bandwidth, and if you have too much going on then it’s not fair to you or the non-profit; because you won’t be able to dedicate the time and energy the non-profit asks you to commit.

If you are in a place where you can be philanthropic, think about what you’re passionate about. Perhaps it’s veterans, puppies or eliminating plastic from the oceans. These are just a few examples, it’s likely if you are passionate about something there is a non-profit working towards the same goal.

Do your homework, not all non-profits are equal and some may require a minimum donation amount from their Board members. Start small, is there a committee you can join before committing to the Board? Get to know the non-profit, if it’s not a great fit move on – it may take a few tries before you find the one that resonates with you.

Non-Profit Finances

Non-profits are required to be completely transparent with how they spend their money. The larger non-profits will have a 990, a tax form explaining how much money they’ve made and where it was spent – this will include salaries.

Be realistic – a non-profit is a charitable organization, but they have the same overhead as for profit companies. I haven’t found too many that are able to get printer ink, paper, computers, etc donated – and to be effective at their mission they need to buy these. Also, people need to be paid well enough to allow them to support their families.

What Else Should I Know

There are a few tools to get you started – Charity Navigator and Guidestar. Both will allow you to research the non-profit(s) you are interested in. LinkedIn may allow you the opportunity to learn about the Executive Director, and often the non-profit will have a bio on the website. Remember, although non-profits need donations to fund their mission; they also need passionate people willing to share their vision and help the organization accomplish its goals.

Don’t Make Decisions in a Vacuum

I’ve been reflecting on choices I’ve made over the years and I was struck by how often I allowed myself to “pull the trigger” on a pretty important decision without taking a moment to play out possible outcomes. As a result almost every single time I ended up kicking myself because things came up that, in hindsight, I should’ve known.

Now this isn’t to say we should live our lives looking backwards – you can’t drive very well if you’re just looking in the rear view mirror. Rather, I want to encourage everyone to hesitate before making major decisions; ask yourself if the rush to a decision is on your terms or someone else’s. Did you put a decision off too long? Or perhaps something just came up and you feel pressured to make an immediate choice.

Sometimes there are no other options, you need to do something immediately and it’s going to be the best choice you could’ve made given the circumstances. For example someone cuts you off and you need to swerve to avoid an accident. For other decisions, especially financial, there is (more often than not) ample time to weigh your options. Unfortunately I believe too many of us just don’t – because it’s uncomfortable or we’re not very well educated about any of our choices.

This leads to last minute decision making, often without enough time to weigh other options or consult a professional. But this IS avoidable. You don’t have to be an expert in everything – we rely on our children’s physicians to help us keep them healthy and our children’s teachers to educate them (even if you home school,  you often get the materials from somewhere).

So where does the hesitation come from to hire an accountant, an attorney or a financial advisor? A refrain I commonly hear is “I don’t need one” or “I don’t have enough money”; but these same people have never worked with a professional (to determine if there really is no “need”), nor have they asked how much the professional charges. In my opinion the insight I have received from hiring professionals has more than offset any investment of time and money on my part.

And I use all three – I have an accountant to help me determine if there is anything I’ve missed; an attorney to make sure my estate plan meets the State’s requirements and provides exactly what I want for my son; and a Financial Advisor to make sure I’m not lying to myself (which we’re all guilty of to some degree). Friends mean well, but even if they’re in the same situation you’re in they are just as likely to overlook things – because they’re living it. An outside point of view will often (not always) be able to identify some think you may not have considered, or explain why something you’ve discounted as not being possible is, in fact, possible.

The Herd Isn’t Always Right

People mean well, I believe this to be true. However they are looking through their lens, not yours – so what’s “right” for them doesn’t automatically fit what you need. Be careful when following advice, no matter how well-intentioned, take the time to weigh it against your goals and purpose.

I understand why people follow along, it saves us the time of making a decision. Decision fatigue is a real thing, we only have so much bandwidth to use so our brain creates shortcuts. But it’s up to us to decide what’s important – meaning we focus our attention on it; and what’s not – we can go on autopilot.

For example – there is no reason to spend a lot of time figuring out how to get to/from work everyday, you probably have a set route and don’t think about it after the first few days/weeks. In contrast, you should absolutely spend time considering the pros/cons when evaluating supports for an individual with disabilities – especially if they can’t speak for themselves.

This is not the time to think “well this worked for this family, and since the person I’m helping has the same diagnosis it will work for us”. In some cases this could be true, perhaps the medication is designed to target specific diagnoses; but all too often it’s just the easy way out.

Not every decision needs to be second-guessed; but if it affects an individual’s independence and/or civil liberties I think there should be a LOT of consideration given. Explore alternatives by talking to people outside your normal circle of friends – this is how you will hear opinions that don’t mirror your own. It’s uncomfortable, and speaking for myself, can be frustrating and aggravating to have your personal beliefs challenged.

But remember – this isn’t for YOU! I’ve found it helps when I am able to take myself out of the equation; ask myself what happens when I’m gone. Yes, this may make MY life easier, but what’s it going to be like for my son. Please do the same.

Social Security Considerations for the Self-Employed

Since my focus is helping families with disabilities, I’m hoping to raise awareness for all those parents out there who may be self-employed. There is, with good reason, a belief the best thing to do is maximize your business expenses to reduce your taxable income. Here’s the catch – your taxable income is what your social security benefit is based on.

In other articles I’ve reviewed the adult disabled child benefit, but as a reminder this benefit is for adult children with a Social Security recognized disability diagnosed before the age of 22. It is 50% of the parent’s retirement benefit when the parent files (and while parent is alive). It increases to 75% when the parent dies.

What does this mean? It means if you are a business owner and you are deliberately keeping your reported taxable income low you’re also contributing a lower amount to Social Security. Social Security uses the average of 35 years of work history to determine your benefit – so one or two low income years is not a big deal.

However, if you’ve been working for 40 years and reporting very low income you need to consider (and plan for) how your child will enjoy their life when you’re gone – if you’re currently subsidizing (paying for things) them. This could mean you have a large life insurance policy, you start increasing your taxable income so you can increase your social security or you’re spouse has been working and you’ll use their benefit.

One last consideration, about you. How are you going to fund your retirement? Again social security retirement is based on what you’ve paid into the system. Hopefully you’ve been aggressively saving into a retirement account – which could be part of why your reported taxable income is so low.

This is not a call to change whatever you’re doing; rather I would like you to pause, evaluate where you are and where you’re going, and then decide what to do. Decisions like this should not be made in a vacuum, hiring a Planner to show you some retirement and life after you’re gone for your child(ren) projections would be worth the money invested.