Do You Have A Parachute?

As I prepare for a talk I’m going to give next month, I wonder how many of us have truly thought about what will happen to our children/loved ones when we’re gone. Yes, I will admit this has been a theme lately, because to me it’s a REALLY, REALLY BIG DEAL.

I don’t have a “support” group of family and friends I trust enough to rely on when I’m gone – I have one or two people, but they are a little older than I am so not necessarily that much help. Therefore I have spent a LOT of time focusing on helping my son develop the skills he will need to live alone; and setting enough money aside to hire to the skills he cannot master.

Unfortunately when I look around I see many families ignoring the fact their children may be on their own. Everyone needs an exit strategy, not just business owners. Start small – list what you’re currently paying for (if you’re child is an adult) that they will need to provide when you’re gone. Then see what resources are available – not everything will require money from you; nor will much of it come from the government.

Estimate how much Social Security your child will receive. If they are receiving SSI they may be eligible for the adult disabled child benefit (Adult Disabled Child Benefit (Social Security). This will be their primary income stream. They can supplement this with food stamps (Oh SNAP!) – this is the foundation.

Next steps are determining what, if anything, else you want them to have. Only AFTER you do this should you be thinking about what you can afford; because the objective is to build a support system, not put everything on your shoulders. Starting from a place of “what can I afford” becomes very defensive, many will start making trade-offs in their minds and adding to an already stressful existence – don’t do it.

I’m a planner, I believe in the value of planning – so it shouldn’t be a surprise when I encourage everyone to sit down with a professional and get an outside perspective. When you jump from an airplane, the parachute you use will have been checked by at least one other person. The stakes are higher than just your life, isn’t it worth getting help?

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“I Can’t Die”

Watching season 2 of Ozark, and the lead character said these three words, and it resonated with me because sometimes it has felt like a never-ending chant in my head. Maybe other parents feel similarly, especially those of you whose child has a disability.

Having lost my wife, I was hit full frontal with what would happen when I’m gone – at the time I didn’t have much of a support network at all and my son was completely dependent. Over the last six years I’ve gone outside my comfort zone and I’ve added a few people I trust and believe will help him; and, more importantly, he’s learned (and continues to learn) skills enabling him to become more self-sufficient. Unfortunately, given current technology, I don’t believe he’s capable of living on his own – yet. But as rapidly as technology is advancing I have faith it will be there in his lifetime.

Part of being a parent is not wanting to outlive your child, part of being a parent of a child with a disability is adding the fear of your child outliving you. Too many of us retreat into our own little worlds, believing (rightly or wrongly) no-one else would understand, or there’s nothing anyone can do.

I’m about as jaded as they come, but I KNOW I cannot be the only resource my son has. The reality is I will likely die many years before he does, and I want him to have the best quality of life possible. I think this is what we all want; and we need to ask ourselves are we providing this if we keep them at home with us instead of looking for Residential solutions, or do things for them because they “can’t” or it’s just “easier”.

I hear, and echo, the fear many have about death and leaving our child(ren) alone in this world. We don’t have much control over when our time is up, but we have absolute control over what we proactively do with the time we have. Not every result is going to be what we want, and there will be dead-ends, work-arounds and incredible frustration – that’s life; and in my opinion we owe it to our child(ren).

Each and every one of us has had help over the years, before we had children. Why should now be any different. No – people will probably not know what to do, or what you need. And,  yes, they will likely not always be able to provide what you’re looking for. But something is better than nothing; and there is NO reason for you to travel on this journey alone. Build a tribe, look for people who aren’t like you – because they will bring a perspective to the table you never could have imagined; and it may just be the answer you didn’t have. Good luck, you’ve got one life so get out there and live it.

Breathe

This week keeping it short – BREATHE. If, like me, you have a child under the age of 21 who is still in school you are, or have already, experienced what I have come to term “end of summer blues”. Speaking for myself, my son will be shifting back into a more “normal” sleep schedule, currently I’ve allowed him to go to bed by 2 am and get up whenever.

Perhaps some are asking “WTF” or, more politely, “why”? Think back to when we were over the age of 18, how many of us had parents telling us what to do? At what point did you start making your own decisions (good and bad) and learning from them? Yes, I fully expect he is going to be MISERABLE the first couple days of school, but I also believe this is part of becoming an adult.

Where “Breathe” comes into it is I cannot allow myself to “blow up”; because then he will respond to my reaction – not learn from his behaviors. I believe most people will learn from their own behaviors if they experience enough of a negative impact (w/o threatening their life or safety). Allowing my son to be exhausted (and within reason putting up with his attitude) will teach him more than I think he will ever learn from me telling him exactly what to do and when.

Losing my temper doesn’t help either of us. I (and all of you who choose a similar path) need to remain calm enough to get our message across – reinforcing what they are already experiencing. Asking questions like “what do you think led to you feeling like this” or “what do you think happened”? Steer them towards the answers you want by asking simpler questions (my son) or whatever they are capable of answering. But, and this is critical, do NOT visibly lose control.

We (parents) are not going to be around forever, and our children need to do as much as they are capable as soon as possible. In my experience, these capabilities far outreach what we give them credit for, because it’s incredibly difficult helping them reach it. We have so many competing responsibilities (work, family, friends, ourselves, etc); and we tend to take the path of least resistance in the guise of “it’s faster”, “they don’t know how” or “they can’t”.

I get it, I’ve said all of these and more. But my son has already lost one caregiver who did everything – I don’t trust the system to believe he’ll ever find another one. So this is self-preservation. I can’t (and if I’m being honest, won’t) do it all. I need him to do things for himself as much as he does. And yes, there are things we may never master – but with a LOT of patience we have a LONG way to go until we get there. In the interim, I just need to “BREATHE”.

Project Sanctuary

Project Sanctuary is a Charity focused on veterans, helping them reconnect with their families. Having spent much of my career deployed and/or as a geographic bachelor, I can relate to how much stress may accumulate in a household, and how important it is for a constructive outlet. Project Sanctuary uses a 3-step process: assess the need, reconnect families, and continued support.

Who They Are 

Heather Ehle founded Project Sanctuary in 2007 to help the military family as one unit, her principle may be summed up as: “The whole family serves, and the best way to “support the troops” is by supporting the entire family.” Project Sanctuary uses evidence-based programs to meet the needs of military families.

What They Do 

Assess the Need – Project Sanctuary has committed to never leaving a family in crisis, they will connect families with services/solutions to address the needs identified.

Reconnecting Families – In addition to retreats, Project Sanctuary extends the option to receive “counseling” in a variety of areas; including, but not limited to: financial assistance/education, housing solutions, personal counseling and employment solutions. These are NOT mandatory, but available if a family feels they need them.

Thriving into the Future – As each family works with Project Sanctuary, their ongoing program will be tailor-made to fit their individual needs/goals. Project Sanctuary encourages families to become “self-advocates”, learning how to speak up for what the family needs.

What Else Should I Know

In May of 2018 they were featured on the Today show, you can watch the clip here. Project Sanctuary is involved in many research projects, collaborations and partnerships to continue to evolve their best practices and best serve military families. It may not be as “glamorous” as free concerts or store discounts, but the impact is lasting and meaningful (speaking as a veteran, although I have NOT personally used Project Sanctuary).

Disclaimer

I am not an employee of Project Sanctuary; 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.

Adult Disabled Child Benefit (Social Security)

In this post I’m focusing just on the Adult Disabled Child Social Security benefit – it’s a topic I’ve had many questions about after past seminars and other discussions. If you, or someone you know, either has a disability themselves or a family member with a disability; then this is for you.

To qualify, the individual must have a disability that occurred before they were age 22, and meets Social Security’s definition. Contrary to what I’ve heard, it is NOT easy to prove a disability to Social Security, many of those who qualify (my son included) use attorneys to help prove their case. Nothing in this process is automatic, it requires action from the individual seeking the benefit (or the individual’s family).

You will need to provide supporting documentation, and I encourage you to save EVERYTHING in hard copy AND digital. I use Google Drive, but there are numerous other options, the key is ensuring it’s available when you need it and knowing where to find it. Digital means it can’t be damaged by water, fire, ripped, etc. Never give away original documents.

Once approved, the Social Security received by the child will be paid based on the parent’s earnings record. This is an important note, because this benefit will continue to be paid to the child after the parent dies (it starts when the parent starts collecting Social Security – either disability or retirement). So if you are a parent, generally  you will want to wait as long as possible to collect Social Security to give your child the most benefit (this is where planning comes in). The benefit is 50% of the parent’s benefit while the parent is alive, and increases to 75% when the parent dies. This will generally not impact the benefit received by parents.

There are limits – the child cannot earn more than $1,180/mth (2018); although certain work expenses may be deducted from the income to meet this limit. The other major requirement is the disability has to occur before age 22. So if you have legitimate concerns, early diagnosis is better (for so many more reasons besides Social Security). The benefit may also be lost if the individual marries. You CANNOT apply online, you will need to go to your local office. However you can either hire an attorney to represent you or complete the Adult Disability Report and bring all supporting documentation when you go.

I’ve met many parents who thought they had to wait until their child was 21 to apply for SSI (which if approved, makes a strong case for Adult Disabled Child). You don’t – as soon as your child turns 18 they will be evaluated based upon their assets and income, not yours; even if they are still in school.

Providing for a child with a disability is stressful enough, and doing your best to ensure they will be taken care of when you’re gone can be expensive. This benefit can help. No, it may not be enough to provide for everything, but if they qualify it will certainly contribute to what they will need when you’re gone.

What’s Your Excuse?!

In the past I would get frustrated when people reach out for a “friend” or say they will be “in touch”, because I would spend hours trying to follow-up only to be met with radio silence. Although I still don’t understand what drives someone to take the first step and stop, I’ve stopped chasing them.

I’ve tried to understand, truly I have. If it was after we met and I said it will cost “x” to work with me, I think I would get it. I’d still hope they would be direct enough to tell me “no” (even w/o a reason), but I’d have an easier time accepting it. But in many cases people aren’t (to the best of my knowledge) reaching out to retain my services – it often seems like they just wanted to be pointed in the right direction.

I’m all for anyone/everyone doing things on their own, however I have learned we ALL get in our own way; so having an accountability partner is a great way to ensure follow-through. Maybe this is the answer, they’re not ready to follow-through. Perhaps the fog is too thick, and the unknown too questionable.

I’ve been there, most recently with my son’s Medicaid application. In my mind I made the process to be this HUGE ordeal, especially after trying to get it done online and encountering a few challenges. So instead of just taking him to the appropriate office and getting it done, I made excuses – “too busy”, “I don’t want to deal with taking him out”, etc. And I have friends in this world who would have helped if I had asked – but I never even brought it up.

Instead, I justified my inaction. He has insurance, and he’s been approved for the rest of his life to stay with it. But there is no telling what the future holds, my military insurance benefits have changed significantly in the last (10) years, and whose to say they won’t again. At least with Medicaid as a back-up (and in 2 years Medicare) he stands a much better chance of having all his needs met.

It became a moot point because the Social Security office filed on his behalf and we received his card in the mail; but now I have to beware considering this a reward for my lack of inaction. If I’m not careful it could lead to further inactivity, with the justification “someone else will do it”. This was my excuse – what’s yours?

Residential Alternatives

I’m excited – more and more of us (families with a disability) are stretching our wings and exploring options other than the “traditional” Residential or live at home until someone dies methods. Increasingly communities are recognizing the value individuals with disabilities may provide (full disclosure, I’m most concerned about I/DD because it impacts me more than others).

Yes, I feel there is work still to be done; because a housing unit built specifically to host a set number of individuals with disabilities isn’t – in my opinion – truly “inclusive”. But it’s a start, and I would prefer forward momentum rather than committees or discussions with no action. These units will uncover the good, the bad and the ugly; and, provided we keep an open mind and understand progress and change involves setbacks, they are going to show us a better way forward.

Alternatively, you could purchase a multi-family residence and let your family member pick his/her neighbors. If you don’t have the money, or don’t want to be a landlord, consider teaming up with another family – form a LLC/LLP and run the house(s) as a business. Key point – it NEEDS to be a BUSINESS. Someone is the landlord, and is ultimately responsible for the upkeep of the house.

This could be a great alternative, because your family member could have a stream of income from the rental properties after you’re gone. With planning, you could use a term life insurance policy to ensure the mortgage is paid off, rather than buying permanent insurance to provide the same desired income stream after you’re gone. Key point – this REQUIRES PLANNING.

My point – I feel you are doing your family member a disservice if your “plan” is to have him/her live with you until one of you dies. Regardless of what their disability is, most people have the desire (and more importantly the right) to make their own decisions and live their lives. And YOU deserve to live YOUR life. This is the 21st century, there should not be many of us who HAVE to live with the individual with the disability.

Please don’t misunderstand me. I am NOT saying don’t love your family member. I can hear the echos of “he doesn’t understand what I’m dealing with”; and I agree. But I will challenge you to take a step back and ask for an outside perspective, from someone who is not vested in your life as much as you are (so not necessarily parents, siblings, spouse, etc). There is HOPE, and it starts with a SMALL step – giving yourself permission to imagine life not being a full-time caregiver. Think about it.