Independence Isn’t Automatic

I worry sometimes, because it feels like there is a huge push to get children and young adults involved in as much as possible, but it’s the parent(s) driving the issue (in most cases). When our children are young, this makes a lot of sense – they don’t have many experiences and most likely don’t have any idea what they would like or not like.

However, rather than backing off, I’m seeing many parents keeping themselves firmly entrenched – in some cases until their child is in the mid-twenties. And I don’t draw a distinction with my concerns between parents of children with disabilities and children without. A disability is not a definitive statement of what someone can, or cannot, do. It’s an invitation to determine what supports the individual(s) may need to achieve the same (or more) success as those without the disability.

I’m not a “parenting expert” – I’m a financial planner and I have gotten very good at finding resources for myself and others (Special Needs Navigator). These concerns stem from working with clients and personal observations. It appears the default reaction for many of us is “I’ll do it (for them)”. How does this teach anyone to become self-reliant?

Instead, I challenge everyone to give up control of at least (1) thing every 3 – 4 months. Start small, and base it on the age and current ability of your child. It may be as simple as “what are you making for breakfast (not what do you want)”? Or, start teaching them how to grocery shop – by making a list. Let them tell you what they want, and rather than saying “no” immediately when they ask for “garbage” (I have a teenage son); take some time to help them understand what it means to eat food that is bad for them – in as simple terms as it needs to be.

Or, you make the list but enlist them to help determine what needs to be bought. Show them how to check when to buy – maybe it’s because you only have one roll of paper towels left. You could even put a sticky note on the roll saying “buy more”, as a scaffolding tool (lay the foundation).

Yes, it will more than likely be more work for you, in the SHORT term. But we’re not going to be around forever, and if your son/daughter can’t (or won’t) do things for themselves what kind of life are you setting them up for? Again, this isn’t limited to those with disabilities, although I feel like we (families who have a child with a disability) may be guilty of this more than others. Please, I implore you, give your children power. Don’t quit because they don’t get it right away. New skills take time, and in some cases, supports. Start with low hanging fruit and work up. You’ll thank yourself in the years to come.

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It’s Not For You

I think it’s sometimes easy to forget, or overlook, that individuals who are in our care because of the disabilities or challenges they have, are in fact, people with their own wants & needs. I don’t think it’s done consciously, I believe it comes from a place of trying to do the right thing – as you understand it.

But I’ve heard people say they won’t do something because it’s too difficult or they don’t need it. While both may be true, it’s important to remember everything is for the individual – not the caretaker. In most cases the individual will need to provide for themselves at some point, and getting their benefits established as soon as possible is in their best interests.

If it’s too difficult for you, or you don’t have the bandwidth, find someone else to do it. No judgments – it doesn’t make you a bad parent or less of a person; quite the contrary, admitting you don’t have the capability and a willingness to outsource shows strength, commitment and love.

 

One Small Step

Our minds are amazing and powerful, and when applied properly can result in us accomplishing fantastic and unbelievable things. Unfortunately, almost all of us have, at times, allowed our brains to become our worst enemy. I doubt anyone does this deliberately, I think it’s hard-wired from more primitive days to keep us alive; but we should be aware and be ready to challenge it when it happens.

I have a few times that stand out VERY clearly – my son’s first diagnosis, my wife’s passing and my pending retirement. Each of these probably seems very obvious, I was facing a significant loss. But there have been less “obvious” times – halfway through a 5k, as I approach project deadlines or even when deciding if I should walk the dogs.

It starts innocently enough, the self-talk isn’t obviously negative; just an overview of other options or possibilities. For me, it didn’t take long for these thoughts to take on a life of their own – I’m creating whole dialogues and if/then end results; and suddenly I realize I’ve convinced myself the worst is going to happen and I haven’t even started down a path. When I was younger I missed opportunities because I wouldn’t give myself the chance to be successful and prove myself wrong.

It’s taken me years to accept my son has Autism, which is not (to me) the same as accepting his diagnosis. I have chosen to refuse to believe he cannot live a fulfilling, independent life. I have had to re-frame what “independent” means, because we all use supports – for some of us they are just less obvious.

Now, I take a different approach. I still evaluate the risks and weigh the pros/cons, I plan for a living so I doubt this will ever stop. But instead of allowing myself to go down the vortex of negative self-talk, I focus on the first step. After my wife died that first step was just getting out of bed, then getting into shower, etc. I literally broke every thing I did into single steps, and celebrated accomplishing them as a “win” because I needed to.

Every journey starts with a step, and no – we’re not psychic. We can’t know what’s around every corner, and sometimes life is going to hit you in the face with a cast iron skillet – and it’s going to suck, a lot. But this doesn’t have to remain your reality. What’s the next, small, step you can take to make things better?

For example – you hate your job. The next step isn’t “find another job” – this is too broad and can be overwhelming. The first step could be what do you hate about this job. Do you control any of it? If you do, what is the easiest thing you can change to make things better. Maybe it’s getting up 30 mins earlier or stopping at the gym on the way home to stay out of traffic. If there is nothing you have control over, then think about the first step to getting a new job.

What do you want to do which you have the skills for? Write out your skills and talents. Write out your nonnegotiable – what are the absolutes you must have for a healthy work experience (be realistic)? Pick one search engine (I like SimplyHired) and start looking. Be aware of your self-talk, and stop yourself when/if you catch yourself saying “I’ll never find something for my skills”; “there are no jobs in my area” or anything else not supportive of the efforts you’re making. These are not helpful, you are going to find answers supporting your beliefs – this is known as Confirmation Bias (Farnham Street, May 2017).

You DO control your happiness, because you control how you perceive and react to the world around you. Take your ownership back, one small step at a time.

Ideas to Stay Afloat

Some of the hardest conversations I have with people is telling them they cannot accomplish the goals they’ve shared with me; even worse are those I have to have a conversation with about how they can reduce their living expenses – foregoing the lifestyle they’ve grown accustomed to. It tears at me, because I wonder if they really had no clue or have they been in denial? Either way, it’s not easy being the harsh voice of reality.

How do they get there? How does anyone? For some it could be medical expenses, or other things they had little control over. However for most I believe it’s an unwillingness to delay gratification. It’s difficult to deny yourself, especially to set money aside for something that will “probably never happen”; but these rare events occur with frequency. Cars are going to require more than routine maintenance (oil changes, brakes, etc) – own one long enough and something major will need to be replaced. Mechanical systems break down.

Same is true with anything else in your life – from owning a house, to having a child. Childcare is expensive, I think most of us understand that. But what about clothes, hobbies, food (especially for teens). We should know these things are going to come up, but so many seem surprised by how much everything costs.

So what to do? Few of us are going to win the lottery, so how can we prepare. Start small – save money into both your retirement account and a “rainy day” fund. The retirement accounts are usually the easiest to maintain, because most employers will withdraw funds before paying you – so you never “miss” it. It’s the savings you have to be intentional about that’s more difficult.

If you’re new to saving, start with 2% of your income to the retirement account. No, this isn’t going to fund your retirement, but it’s small enough most of us won’t notice it’s gone. The goal is to scale over time. Same is true with the “rainy day” fund. Open an online account and start an automatic transfer set for (5) days after each pay check (6th and 20th if you get paid on the 1st and 15th). Generally this is far enough to provide a buffer if there are holidays, or other delays to the money hitting your account.

I’m partial to Ally, because they’ve made it very simple to enroll and they’re offering a 1.6% interest rate (as of 5/13/2018). However, I encourage everyone to do their own homework – I like Bankrate’s website. Start with an amount small enough not to be missed, but large enough to be meaningful. For most, I wouldn’t save less than $25/pay period – but you will have to decide your own threshold. The more you can afford to put aside, the better prepared you will be for life’s “oh craps”.

Build your support network too. Try to surround yourself with positive people – not Pollyannas, but with people who understand life happens and it’s best met on your own terms. I prefer to be around people who have overcome adversity, although they haven’t necessarily had my experiences. We keep each other grounded – allowing a brief “pity party”, followed by a shoulder and non-judgmental ear. This network is best built before you need it, because when you’re in a dark place it seems to mostly attract “Emotional Vampires” (Orloff, J, 18 Jan 2011).

The most important take-away is this – shore yourself up, using small steps. Take some time to get to know yourself – what sets you off and what makes you feel great. Surround yourself with people who can help you feel great, not small. And invest in yourself financially by setting money aside. Little amounts first, increase by at least 25% every quarter (if it helps, go by key dates: Martin Luther King, Jr Day , Tax Day, Independence Day, Halloween).

Entitlement

I’ve heard a lot of discussion, for and against, government forms of support – Medicaid, SNAP, housing, etc. Most of the comments seem to focus on who should or shouldn’t receive the help – but none of those making the comments fit what I would see as “qualified experts”; which to me is individuals who have worked in these spaces or are experts on the benefits themselves.

It feels like there is a LOT of anger about those who don’t “deserve” benefits receiving them. In fact, on more than one occasion I’ve been told the government is doing “too much”; and everyone seems to have a story about someone they know who “deserved” benefits not being able to receive them. Yet when I ask clarifying questions to understand what led to the benefits being disapproved I’m met with disgusted looks and/or change of topics.

As I’ve said before, I do not doubt the system is being abused. I’ll even admit it’s “broken”; but I believe we should look at making repairs and tweaks – rather than do away with the entire thing. Let’s focus on Medicaid to provide a concrete example. And we should be very careful about what changes we make – beware unintended consequences.

Medicaid is health insurance for those with disabilities and the destitute. There is discussion in progress cut $1.4 Trillion (with a “T”) in Medicaid (See Article Here). Sounds reasonable – save the government money. However, this could force States to reduce their funding, hurting those who need assistance most. “The Congressional Budget Office estimated on a preliminary basis that Graham-Cassidy would result in the loss of health insurance coverage for “millions,” cap federal Medicaid payments to states, and give states the option of imposing work requirements on parents with children over age 6 (Andy Schneider, 2/12/2018).”

Yes, people need to work. But what if you have a child with significant support requirements, and one of the parents is a full-time provider? This occurs more often than I think most people not impacted by a disability realize. These families are not advertising their situation, they are putting their heads down and doing everything they can to survive. In many cases they didn’t ask for this and without the extra funding face losing their homes.

Safety nets, like Medicaid and SNAP, are in place for a reason. If you find yourself begrudging someone of this assistance, ask why. In some cases it almost sounds like jealousy – yet when you peel the onion back those same individuals complaining have, more often than not, made some poor life choices putting them in the negative financial situation they are in – without the option of a government “bailout”.

Again, this is a generalization. Yes, there are deserving people who cannot get services. My son, for example, did not get approved for the amount of SSI I had expected and a few of the items I filed with the VA were found to not be “service-related”. There are processes in place to contest findings you don’t agree with; or you may have to learn to live with it. If you want to increase the odds of your success, talk to those who have gone before you.

But don’t fault another family for doing what they need to do to survive. You don’t know their circumstances – when was the last time you were completely open about what was going on in your life with a complete stranger (who wasn’t your physician)? Want to change the system(s), look for ways to create opportunities for those less fortunate than yourself. Offer hand-ups, not hand-outs – and stick to what you control. I think you’ll be happier for it.

Special Needs Planning – More Than An IEP

When you have a child with a disability, much of your energy may be spent in ensuring he/she receives the education they are entitled to. And make no mistake, this can be a HUGE battle. However it’s not the only consideration our families have. We need to think beyond school, and we need to think about ourselves (parents/siblings). This isn’t selfish, quite the opposite. Because if we don’t take care of ourselves, we’re setting the individual(s) with the disability(ies) up for future failure.

Families should make the time to think about their future – what do parents want to do, who will take over when they are gone or can no longer fill the role, etc. Speaking as a parent, the first thing which comes to my mind is “who has the time or bandwidth?”. This is why I think it helps to work with someone, let them do the heavy lifting. It’s why I hired an attorney for son’s SSI claim even though I felt I had an “airtight” case; as well as hiring another attorney for guardianship and estate planning.

The Social Security attorney will be paid by the first payment we receive from Social Security – if we don’t get paid neither does he. And I’m not going to miss the money, because I don’t have it now. For me, it was a no-brainer. Guardianship is a different story, you will need to decide if it’s appropriate for your situation; or, is supported decision making a better solution. Find a support group, talk to those who have gone before you and do your best to make an informed decision.

Estate planning is non-negotiable in any situation, but especially when you have a child(ren) with a disability. This is NOT about you, it is about ensuring your child(ren) is not left alone to figure things out when you’re gone. It’s hard enough for families without disabilities.

Financial planning should be more than investments and insurance. Yes, both of these play a role, but your life has more nuances than this and so should your plan. Consideration should be given to YOUR goals and how you can achieve them – are there resources you hadn’t considered or weren’t familiar with (or just haven’t had the time to research). Discuss social security – for you and your child; taking into consideration the impact of your filing if your child qualifies for the Adult Disabled Child benefit.

What does retirement look like for you? For your child? Will your child have enough to enjoy the quality of life they have now when you are gone, or do you need to put guardrails in place? What about you? Are you sacrificing your happiness to provide for your child (we all do this, to some degree). Perhaps there are resources and options you’re not aware of to give you a break (respite) or lower your monthly expenses allowing you to treat yourself now and then.

Education is important, and having hired an education consultant to help my son transition from middle to high school I understand it’s not always easy or inexpensive. However; there will be lulls when you can, and should, think of yourself. Most importantly, you’re not alone. You’re not the first, or only, parent to face challenges – even if others haven’t faced the same ones, the tools they used to cope may help (or you can adapt them to your situation).

I’ve been doing this “alone” for (6) years now, since my wife passed in 2012. The biggest mistakes I could have made would have been focusing on just one aspect and not asking for help. “Outsource” what you’re not good at, and help others using your strengths. You don’t have to be a charity, but I do believe you need to treat others as you would like to be treated (fairly). Again – you’re NOT alone. I know how overwhelmed I have felt, and I have thought “noone else understands what I’m going through”. Then I forced myself to find others who have overcome hardships and I mined them for information and strength (and still do). You can too.

Adult Disabled Child Benefit

Social Security offers special benefits for those who were found to be disabled (meeting Social Security’s definition)  before the age of 22. In certain circumstances the child – which could mean adopted child, stepchild, grandchild or even step grandchild – may be eligible to be paid on a parent’s (grandparent’s) Social Security earnings record. In my experience the easiest way to prove this is applying for SSI when the child turns 18, IF the child has a significant disability limiting his/her ability to work. I will ALWAYS encourage individuals to work if they are able, because it ultimately provides much more freedom (my opinion).

These benefits are paid on the parent’s earnings, so it is not required for your child to have earned any credits. There is a catch – the child cannot have “substantial earnings” – in 2018 this means they cannot be working and earning more than $1,180/mth. As with any program, there are exceptions; but rather than try to explain them please check out Social Security’s pamphlet on “Working While Disabled“. Another caveat – if the individual marries he/she may lose their benefits; again, there are exceptions and the best source is going to be the Social Security Administration.

A frequent question I get is “will my child’s payout affect the amount I receive?” Short answer – no, generally not. However, Social Security does have a family maximum payout, which is usually between 150 – 188% of the worker’s basic Social Security benefit. The formula is complex, and if you’re interested here is a link to a Social Security Bulletin explaining it (Vol 75 No 3). What I would like you to take away is this – in MOST cases there should not be an issue; but if you have any doubts or concerns the Social Security Administration, or an attorney specializing in disability benefits, is your best resource.

Another benefit to someone receiving adult disabled child benefits, if they were previously approved for SSI – they become eligible for Medicare after they’ve received the adult child social security benefit for (2) years. This is another complicated area, and best left to a discussion with a professional – but it’s important to know the option exists. Here is a link to Social Security’s overview of Medicare.

I didn’t do as deep a dive as I normally try to, because there is so much complexity with Social Security, Medicaid and Medicare. I do not want anyone to rely solely on something I’ve written to decide if they should apply or not; or what benefits they are eligible for. The options I advocate for are (1) talk to an attorney specializing in disability law and/or (2) contact your local social security administration office.