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.  .

Teen Isolation: Autism Issue or Cultural Characteristic?

A typical day for our 17-year-old son begins with me dropping him off at school. Classes. Eating by himself in the lunchroom. Driving to his work study job with his job coach. Shredding paper alone or with the job coach (he says there's usually no one else there when he's shredding).  More classes. Home (I pick him up). Snacks and game time on the DS. Meet with the algebra tutor for an hour. Walk outside. Dinner. Madden football. Homework. Bed. Repeat, every weekday.  


What's missing there? Social activity and connection with other teens. He has no friends. FF is not currently participating in anything school related or even any community-sponsored activities for teens. (Actually, there are very few of those anyway for 17-year-olds.) He can't compete in sports, hasn't attended either of the two school-sponsored dances, and is not a member of any club. New research from Washington University in St. Louis suggests FF isn't alone in his aloneness.  (See "Teens With Autism Face Social Isolation.")


As a kid with high functioning autism, FF is thoroughly opposed to activities created solely for kids or adults with disabilities. Special Olympics, Best Buddies, and adaptive classes at the Y are okay for other kids but not for him. In his mind they are exclusive rather than inclusive. And he bristles when people suggest he find a friend who also has autism or someone with disabilities who has similar interests. I understand FF's frustration. If I were in the market for a new friend, should I be limited to near-sighted, post-menopausal women with thyroid problems?


So where does that leave us?  See paragraph one, above.  


I believe that the majority of teenagers--whether they have ASD or not--benefit from being included and having positive relationships with friends of their own age. There are people who disagree with me on this. Teachers, some parents, and even some folks on the spectrum believe that many children with autism prefer to be alone and if given the choice, will opt to play by themselves. Indeed, when presented with an opportunity to participate in a group activity or after school event, my son Fickle Fan will now almost always respond, "No, I'm fine."  


But is that because he'd rather be alone?  Nope. I don't believe it for a second. It's a defense mechanism. It's become too much work to navigate the social issues of teendom. He doesn't know what to do or say. He doesn't always know the vernacular, isn't in on the issues kids are discussing, and can't always pick up on the social nuances or cues. It's tough. I get it. But it's so important. Having a friend or at least a group that would include him would help him connect, give him things to do, help him see other perspectives (or at least understand that there ARE other perspectives), and give him something to look forward to during the week.  


We've tried addressing the social isolation issue in team meetings or case conferences at school.  In general I think staff are open to suggestions, but for the most part they don't see it as a major issue.  FF is actually well liked in his classes, they say.  They've tried to assure us that isolation is the norm these days, because most teens are only connecting with one another via the internet or texting--both of which FF avoids. But I don't really buy the teens-only-have-cyber-relationships point of view. It's not what I'm hearing from the few parents of teens who I know. Yes, they text and many are more connected to their FB pages than their families, but they also meet up at the games, go out for pizza afterward, do service projects, hang out at each other's houses...


Helping build sets with the theater crew, meeting with a book club, taking pictures for the yearbook, participating in a stop-motion animation or filmmaking club, joining Habitat for Humanity (as long as they don't meet at 7 a.m or in the pre-dawn hours--a subject for another blogpost)--these are all things FF is capable of doing. But getting him to take that first step now is very challenging. 


So how do I know FF would benefit from social interaction?  He just returned from the annual Thanksgiving trek to visit our families in Michigan, a trip he really looks forward to every year.  And, like every year, he had a fabulous time, not because of all the garlic mashed potatoes and two kinds of pie, but because he loves seeing and interacting with his cousins and uncles and aunts, playing football, going to movies, having sleepovers, hearing outrageous stories, and listening to his uncles bash the refs who are obviously biased and hold deep seated prejudices against the Lions. His cousin, one month younger than FF, now has his first job at McDonalds, so FF is now ready to go out and fill out applications.  He's inspired.  Those are all good things, things most teens experience as a matter of course, but that FF gets just once or twice a year.  


And it's not just family FF responds to. The high school football team (I've thrown my kudos to them in a previous post), are great with FF, joking with him and helping him feel connected to the school.  So I know that peer connection is important to him; I just don't know how to make it happen.  


First, as always, it can't be mom or dad who suggest an activity. Parents are hopelessly pathetic, a view FF shares with probably most of his peers. I think he also suspects that when I'm suggesting something, I'm working an angle--job skills, social skills, communication, independent living. And, yep, he's right on that one. So it can't be me that initiates the suggestion. And, increasingly, it can't be a teacher, even one he trusts. 


I think schools and parents are at a loss as to how to proceed once students with ASD reach high school and adolescence.  Here's my wish list:

• More peer mentoring programs and training.  
• The use of peers to "recruit" kids with ASD to attend a club meeting, join the choir, help out with the chili cookoff.
• Staff who can facilitate and guide social inclusion--"people bridges." (The school social worker paved the way for FF's workouts with the football team.) 
• And staff at each grade level who are looking at and helping create opportunities for social inclusion and who will help encourage kids with ASD to get involved. 

Any other suggestions?  If you have creative ideas for eradicating teen isolation, please comment.  Or if you agree with the suggestion that all teens are isolated, let me know that too.  

Emptying Garbage. Seriously??

There've been several very good blogs, articles, and other helpful tidbits posted lately for families like ours who are doing the transition shuffle.  I'll try to share resources here whenever I come across them.  


Autism Speaks this week highlighted a Laura Shumaker post that talked about transition as a marathon as opposed to a sprint.  It was really a two-in-one post, since Shumaker also shared the comments of Caryn Sullivan's recent blog about her transition IEP meeting for her 20-year-old son. Sullivan was told that upon leaving school, he could spend 4 hours a week doing clean up at a light industrial facility. I completely understood her reaction: "Seriously? Four hours per week emptying garbage? That is the end game, after the scorched earth attempt we made to socialize and educate him, at great expense to taxpayers and ourselves? He has skills and brainpower."  

I had the same experience last April when told that our son Fickle Fan's job experience this year would be picking up recycling around the school. Seriously? After 14 years of an incredible struggle to educate and include him?? Tears were shed. I actually complained enough that we got an upgrade. Sort of. For the last 4 months he's been shredding paper at a home inspection company. While I'm glad he's had the chance to go out to a job site, I don't think it's one where he's had the chance to interact with other employees or demonstrate his strengths and skills. I had envisioned that work study would be an opportunity for Fickle Fan to job shadow at various sites around the city, try out different work environments, and explore the world of work. Not quite. At least not yet. 


This could be Fickle Fan's last year in school. If all he has on that resume is picking up garbage and shredding papers, I'm concerned that all he'll get is more of the same when he leaves school.   


We have some very promising programs here in Indiana, putting young adults with developmental disabilities into better jobs in their communities. I really want to walk down that road, not the one that leads to the four hours a week picking up garbage. Otherwise I may need to quit my day job and begin a new life as job developer/coach/placement specialist.  Scary.  I'll keep you posted. 


As a family we are, after all...moving on.

Do the Cha-Cha!

You can't see it, but my husband and I are doing little celebratory dances this week. Actually, it's probably good that you can't see it. Neither of us can dance. Fun for us, maybe, but not a pretty sight. 

Why the celebration cha-cha? Yes, Michigan State just whomped Michigan--always a good thing in our book-- but the real reason we're dancing is that Daughter Dearest (DD) is making progress. Or maybe Progress, with a capital P. DD, who's 20, got her first job three weeks ago at Kohl's. She worked three days this week, is keeping up with her Algebra class, AND today she volunteered with the Kohl's crew at a local therapeutic equestrian center for an annual event.  Not so unusual for most 20 year olds, maybe, but for DD this was noteworthy. More than noteworthy. Celebration cha-cha worthy!  


Last post, I explained DD's battles with both OCD and Asperger's. The last couple of years have been doozies. She crashed and burned her first semester of college. Came back, tried taking classes locally at community college, but struggled there too. Began applying for jobs, but never got past the first interview anywhere.  She spent a year in therapy and her physician tweaked her meds, to address symptoms of depression and her extreme lack of focus and motivation. But for the most part, we were going nowhere fast.


So here's the ta-da! part: This past summer we had a counselor, well-versed in autism, do an educational evaluation for DD, not only to rule out Asperger's, but also to learn more about her strengths and challenges. It was an eye-opener. We knew she was bright, but her counselor revealed that her IQ is actually very high. Despite her struggles with basic college Algebra, DD scores off-the-charts in computational math. Somewhat less so, but still high, in applied math. Her organization (executive function) and lifeskills, however, are way below normal, and she has extremely high anxieties and low self-esteem. DD would stop attending courses if she felt she was not doing something right or if she hadn't completed the homework or studied for a test. She was guilt ridden and stuck. 


The counselor confirmed that, though it's a tough call because she's on the fence in a lot of areas, DD is on the Asperger's end of the autism spectrum. We always knew she had traits, but girls with Asperger's present so differently from boys, that we just didn't see the ASD. We considered her quirky. Her OCD was our biggest concern. The counselor also helped DD understand that obtaining disability services and supports would be key to her success in school, since she would need tutoring, extra time in exams and understanding from her professors. 


So that's helped. This semester has been one of trying out the supports to see if they can help DD not only stick with it, but shine. She's gotten an A on the first test. Mid-terms are next week. We'll see.  


Meanwhile, we've also been working since the beginning of the year with Indiana VR. In the spring, she began working with a local agency providing employment services.  They interviewed her, tweaked her resume, and then had her fill out applications. They even took her to job sites to submit the applications--something DD was always loathe to do. Kohl's hired her last month. So amazing. And thank you, Kohl's, for encouraging your employees to volunteer in their communities. We'd been trying to get DD out to volunteer for the past year.  It's a good thing to do, it bolsters the resume, and it helps people make connections with one another. 


Okay, enough already.  We know that sometimes it'll be two steps forward and one back, but right now good things are happening.  Do the cha-cha!


As a family, we are, after all...moving on. 

Introductions Are in Order

Okay last time I tried this, Google Chrome crashed on me as I was half-way through my post. Not a good sign. We'll see what happens today. 


Since we were practice blogging (thank you, Arc of Indiana), I threw my first post up there to see if it would stick, so to speak. I jumped right in, though, without introducing you to the cast of characters. Rude of me. So here we are:


Anne:  That's me. Occasional writer, part-time employee, wife, mother of two.  Procrastinator extraordinaire. 
Eric:  My husband. Vice president of human resources at a hospital one state over.  Quirky sense of humor.  Tigers, lions, Spartans.  Yes, we are and will always be Michiganders at heart. 
Daughter Dearest:  Our oldest. Part-time college student. Part-time brand new employee.  Constantly battling OCD.  Now learning to accept that she has Asperger's as well. Passionate about fantasy fiction, online escape games, anything with dragons. And Glee, of course.
Fickle Fan:  Our son.  A senior in high school. Diagnosed with high functioning autism at 3 1/2.  Passionate about football (but his loyalties tend to shift to whoever's in the lead--thus the name), Top Chef, movies, plays. Passionately hates school. 
Bullet:  Cat in residence. She adopted us six years ago. I know: The name is weird, but she brought it with her.  What can you do?


I have a few ground rules.  I don't feel comfortable talking about my children unless I have their permission.  I did ask; I do have permission.  BUT, I'm not allowed to post their photos (so Fickle Fan's picture, in my first post, needs to come down). Darn. That limits my ability to decorate my space here, but I'll do what I can. 


It isn't my intent to embarrass my children (although I'm good at that!).  Rather, we're sharing what we're going through so that we can learn and other families might learn from our experiences, good and bad.


Okay, Chrome has already crashed again. So I may need to post this prematurely, just to get this up there, and then figure out what the problem is. Aaaaargh! 


For the most part "Two in Transition" will focus on how we as a family are facing the opportunities, frustrations, transformations and unknowns of the transition process. Transition is the fine art of helping students with disabilities move from high school to the world of work, community participation, and postsecondary education or training. It includes special needs trusts, guardianship, college planning, student support, driver's ed, dances, relationships, housing, employment, and more.  


Like an increasing number of families who have children on the autism spectrum, we live life in two states.  We struggled mightily in downstate Illinois to support Fickle Fan, but there was a painful lack of services, educational training and understanding, medical support, and community acceptance. Sorry, Illinois, it's the truth. Eventually, in order to provide Fickle Fan with a better future, we decided it would be necessary to leave the state.  My husband, however, has a good job, with a good retirement plan and works with a team he likes. Rather than yank that stability rug out from under us, we opted for the two-state solution: My children and I live in Indiana; my husband continues to live in downstate Illinois. For the most part he comes here on weekends; when he's on call or for special events, we'll go back there for weekends. Yep, it's a little strange, but it actually works.  We're now in our fifth year of this arrangement, and I think it was a good decision on our part. 


So, that's the status.  Next time, I'll give you the scoop on Daughter Dearest.   And, as always...


As a family, we are, after all...moving on. 

You don't wanna know...

So, a couple of years ago, I'm picking up my son from high school after weight training with the football team. Teen son, we'll call him Fickle Fan for now, gets in the car and after a moment starts snickering, with this very self-amused, mischievous little grin on this face.  Fickle Fan has high-functioning autism so it's just amazing to me that he's working out with the football team (and he's accepted there!) in the first place. The wicked little grin soon leads to guffaws of laughter--infectious laughter.  "Wow, Fickle Fan," I say, pleased that he's actually happy after a day at dreaded school.  "What's so funny?"  He looks at me, and for a minute this "Oh, no, my mom is here with me" expression appears on his face.  He looks down at his lap and then says with this delightedly guilty look, "You don't wanna know, Mom."  


I obviously had several choices there.  As the parent of a teen with special needs and, especially one with a developmental disability and a social delay, I'm used to knowing all:  what's up, what's down, what's the matter, what's for dinner.  But he's an adolescent now.  Fifteen-year-old boys are just not the I-need-to-rush-home-and-share-this-with-my-mom types. And that's not only okay, it's a good thing.  


So though I'm thinking, "Uh oh!  What disgusting piece of teen trashiness did he overhear in the weight room?"  I laugh, and give him the moment.  "You're right, Fickle Fan, I probably don't want to know."  ...and I celebrate--his inclusion, his independence, his adolescence.


As a family, we are, after all...moving on.