Have You Talked with Your Parents About When They Die?

Last semester FF was dutifully (not a word I often apply to him) doing his homework for his Intro to Sociology course at the local community college. And this question came up. Yes, that one up there in the title. Oh boy.

Sociology was an interesting but sometimes challenging course for him. In addition to examining the sociological perspectives on how we humans interact, oppress, manipulate, nurture, and mate with one another, for an assignment he had to observe a crowd of people and then break a social norm. (He walked around Kroger wearing a clown nose.) And, of course, write a 4-page paper about it. As you can imagine, it was just a thrill ride for a young person with autism whose only goal in life is to fit in. The final paper was a scintillating 6-page introspective look at a day-in-the-life-of FF.

A little side step here: Probably the very worst type of writing assignment you can give to my not-so-little non-writer is one that requires him to write about himself. There was many a time in elementary, middle, and high school when a well-intentioned teacher caught an earful of insolent, bellicose protest for handing FF the "Keep a Daily Journal" directive. I would imagine that to him it's like asking goldfish to not only jump out of his bowl but also to flip flop under the warm caresses of a blow drier set on high for a half hour or so. 

And yet he's making some progress. "The brain is a muscle," so says a meme that pops up now and then on the internet. I really do believe that the more he stretches and pokes and prods into the areas that are incredibly difficult for him, the more capable he becomes. He completes online modules independently. He checks his assignments and grades regularly.

Doesn't mean it's always easy. Doesn't mean he no longer experiences bumps in the road. He does. He still doesn't understand why it's important to be polite or tactful. He will tell you he's ready to live in an apartment, but he doesn't do laundry, clean anything, recharge his phone, or get himself from point A to point B. He can't articulate a life goal yet. He needs to be reminded to take his medicine (although he refills his med strips by himself). He has no friends. He does not communicate with anyone via phone or email other than his parents.

This is FF's version of high-functioning autism. 

That brings us to the Sociology 101 questions: "Have you ever discussed the issue of aging (your parents' aging) with your parents? Have you made decisions, together, on what do do in the future?"

Little does that Soc instructor know that these are the issues that pester and poke at every parent of a child with a developmental disability. 

His answer was, essentially, a little bit. They (the parental units) talk with each other a lot about it, but not as much with me. 

True. He knows that we plan for his future and for that of his sister. He knows that we have limited guardianship for him, though I really don't think he understands the full extent of what that means. We've told him that we have set up a special needs trust for him and though we haven't explained all the details, we've tried to let him know that we're saving for his future. He was thrilled when the ABLE Act passed, because he understands that it means he can now receive benefits (he's not on SSI or Medicaid) but still save money for himself. He won't need to promise to be poor for the rest of his life.

That's all good as far as it goes. But here's the problem: We haven't talked about or really dealt with the "what if" possibilities with FF or Daughter Dearest. Those range from the very drastic and most terrifying: We're both killed in some catastrophic accident next week, and the two of them are left to figure out life on their own. Who do they call first? What should they do? Could they stay here in our home with supports? Where would they find those supports? Should they move to another state to be closer to family? How would that work? 

And then there are the aging, getting sicker variations: One parent has increasing health challenges and the other dies of something unexpected. Or, both parents are failing fast--my husband has an existing heart problem; my family has a history of both heart disease and Alzheimers--and FF and DD need additional supports. Who do they call to advocate on their behalf if we're no longer able to do that for them? 

During our short conversation about the Sociology assignment, FF told me they'd watched a video in class about aging in America. Then he bluntly laid it on me that he would not be the person to care for me if I needed help or had to go into a nursing home. Uh, yep, I knew that. I really need to live to 120 with the vim and vigor of a 50-some-year-old and then say goodnight. 

That professor opened a can of worms with her question. Or rather, the can was already slightly open; she just cranked up the lid. 

We've already done the basic architecture--financial planning, guardianship and the special needs trust--we just need to put more detail into the blueprint. That will mean encouraging and even pushing them to practice independent living skills. It will mean painful discussions with them and with far away family.  And it will mean contingency instructions for DD and FF. We're nearing retirement age. 

The clock is ticking. Aaaaargh!

Special Needs Trusts

We are now the proud owners of a 3-inch black binder, neatly and nicely assembled, with a title page that says "Estate Planning Portfolio for Anne and Eric."  Thanks to our attorney, the binder is stuffed with our wills, financial documentation, files, communications and a CD that contains all of our banking and investment information and plans for our children. It also includes something known as a Special Needs Trust for Fickle Fan. It's a Major Step (capital letters) down the transition road, and one that I've avoided taking with every fiber of my being.  

Forewarning here:  I have absolutely no expertise in financial planning or the laws that go with it. I'll share our story and concerns here, and if that helps you take action, great!  But I'm not advising you to do exactly what we've done--do the research (talk to the Arc of Indiana--I've included the link, below) or an attorney.


Now that I can mark that one off the transition checklist, yes, I feel a sense of satisfaction and more responsible as a parent.  I won't feel quite so much as if I'm leaving my children in the lurch every time my husband and I are in an airplane together without them (which is amusing, in that it's happened all of twice that I can think of in their 21 and 18 years of existence--we don't live near family and finding someone willing and able to take on our kids, even for a weekend, has never been easy).  But the whole planning-for-their-future thing still makes me a little queasy because it's tied to the b word ("benefits"--we'll whisper it for now.)


So, other than the gut-wrenching who-will-care-for-them question, why, exactly, do you need a plan and a special needs trust rather than just a will? Maybe you have a kind, wealthy relative. Could you leave it up to them?  No. No. and No. Our children (mine and yours) will most likely need life-long services to support them, and in the majority of cases that means they'll need to be on federal benefits--Medicaid, Medicaid Waiver and/or Supplemental Security Income (SSI). There. I've said it. But couldn't you just pay for it yourself?  Maybe, for a short time; but it's not likely for a lifetime (yours AND your child's, mind you). Also, depending upon the state where you live, your child may not even be eligible for some services like housing programs, job training, and health care if they aren't receiving benefits. That's because the agencies that provide those services get reimbursed through benefit programs; there isn't always an out-of-pocket option available even if you could afford it.  


Services are connected to benefits, which are tied to your young adult son or daughter's income--essentially meaning they need to stay somewhat impoverished. An influx of income (from an inheritance or lottery winnings or a gift from a wealthy relative) can torpedo the support scaffolding you've so carefully put in place for your child. Oh no! In that event they would need to "spend down their income" (a nasty phrase) just as some senior citizens need to do to qualify for long-term care services. Services may need to be suspended until your child has spent the new funds to the point where they're again within federal benefit levels.


A special needs trust protects the services scaffolding and allows your adult child to remain eligible for benefits.  But benefits will only pay for things like housing, food and medical care. What about that vacation to Canada, a new microwave, a backyard grill, birthday gifts for Uncle Moe, Saturday dinners at Red Lobster, movie tickets, a must-have Indiana Colts jersey?  That's where the special needs trust comes in. Let's face it: You're handling all of that now.  When you die, the special needs trust and the person you've appointed to oversee the trust will ensure that your child is still able to buy dog food for Rover, take ukulele lessons, and  pay the cell phone bill.  You get the picture.  Without a special needs trust, our son FF would get food, health care and shelter. That's it. With a special needs trust he has a much better chance at living a life he'll enjoy.


So, yes, for us this was a monumental challenge, fraught with complexities:

• Our children have varying challenges that impact their strengths, challenges, and potentials.  
• We aren't millionaires and aren't expecting to win the lottery anytime soon.
• We're forced to take a wild stab at what their financial needs will be and, with that, what their capabilities might be. Will they be able to work full-time jobs?  Will they graduate from college?  
• We've fought hard all their lives to help them be independent and then we set up a trust--a sort of financial safety net for them.
• All of our family members have problems of their own. Setting up an estate plan means establishing a will, which means we have to make that decision. The big one. Who can possibly care for them, advocate for them, smooth the wrinkles from their lives as we've done when we're gone?  
• My husband lives in one state, we live in Hoosierland, most of our relatives live in another state.

Here's what I've learned in this process.  

• The plan is flexible.  As their lives change, so can the plan.
• We don't need to be millionaires (although that would certainly help).  A special needs trust can be funded upon your death with a life insurance policy that establishes the trust as the beneficiary. Trusts do cost money, however; there's usually a one-time enrollment fee, plus maintenance or consulting fees, and tax preparation fees once the trust is funded.  
• Thoughtful, wealthy relatives can still provide funds to your child, but they need to give the money to the special needs trust, and as embarrassing as it may be, you may need to  explain that to them in a letter.  
• The Arc of Indiana's Master Trust webpage is an invaluable source of information on trusts. You can set up a trust for your loved one through the Arc, which is respected, trusted and less expensive. We ultimately opted to go with a private attorney because of the potential three-state complexity of our situation.  Even so, the Arc's resources and expertise were very helpful to us. Melissa Justice of the Arc does trust presentations throughout the state, and there are upcoming presentations in Gary, LaFayette, Indianapolis, and Bloomington. Go, listen, ask questions--even if your child is very young!
• Though the reality is that FF may be dependent on state and federal benefits, the special needs trust will help to ensure his independence when we pass away. 
• Planning needs to extend beyond our generation. Appointing siblings as guardians or trust managers may be a good option now, but what about when they're in their 70s or 80s?  It's good to have a back-up plan in place. (Nieces and nephews?)
• It helps to have a spouse like mine, who's not only good at but really enjoys the bean counting aspect of retirement planning.

So I feel better. We still need to do some pow-wows with family to let them know what to expect. Still makes me squirm.

Next up, we'll deal with guardianship, another Major Step. Happy planning, everyone.  .