The Waiver

The story of money and funding in my adulthood began on an early March afternoon in 1982, in the living room of my second-story apartment in Ithaca, N.Y. My roommate Jon and I were wordlessly enjoying our intelligence and listening to the cold wind outside when, above our heads, something screamed.

We looked at each other and Jon said something that social media now abbreviates to WTF, then we heard tiny paws scrabbling and another shrill scream. Squirrels. “Guess those nuts for winter are running out,” Jon said.

Those long-gone squirrels (some gone longer than others) come to mind every June when the notice arrives in my mailbox from the NYC Human Resources Administration: “Dear Consumer, it is time to review your Medicaid/Managed Long Term Care/Medicare Savings Program (QMB) coverage. Please carefully read the printed information that appears below…”

I didn’t always but I sure do now, year after year, my stomach making little sounds that are probably spelled something like QMB. Never have the words said plainly what I, through the years, learned that the letter really means: Carefully obey and adhere to a set of shifting and unwritten rules or we will shut off the tap! When people want your attention, they talk about love and sex. When they want you on your knees, they cut off the money.

Parents of special needs kids say “Medicaid Waiver” the way German troops probably once whispered “Patton’s coming.” According to the waiver page of Medicaid.gov (“Keeping America Healthy”), “People with Developmental Disabilities who are not covered by Medicaid can receive similar services by applying for a Medicaid waiver.”

Services run from case management and service coordination to habilitation and respite – all stuff a compassionate society has degreed sensible and needed after the move some 30 years ago away “from institutional care for the elderly and persons with disabilities in favor of providing home and community-based services.” 

There seem to be several types of waivers designated by “section”: 1115, 1115(b), 1915(b) and 1915(c). I try to find out what these numbers mean by reading their web pages that are filled with words such as “home,” “community settings,” “continuum of services.” I still come away confused, left with just my familiar feeling that when my 16-year-old giggles over “The Teletubbies” any money that keeps a respites worker coming or a Saturday program open, that lubricates the wheels of help, is a godsend.

That money is invisible to me; agencies seem to get it directly. It’s also easy to interrupt. Once when I ignored the notice and the deadline passed, our home-respite worker soon called me. “My supervisor called me and told me not to come to you guys anymore,” she said.

I’ve tried many ways to mess this up, starting with ignoring the notice altogether (…my supervisor called me … ) to answering the questions honestly, clearly and on time. One June, preening with efficiency, I instantly handed the notice off to Alex’s excellent service coordinator to fill out and deliver to the Medicaid office weeks before the deadline. Our coordinator was on my phone three days later. “They said we can’t submit it yet,” she said. “They said we’re trying to submit too early.”

As I carefully read the printed information June after June, I also realize that keeping the money flowing is getting harder. Alex’s agency, for example, now has a full-time staffer to help parents wrestle with the waiver form: a full-time salary not going to a service coordinator, a camp director or someone to mop the floor of a residence home.

Not to mention how the bureaucracy annually tries to trick parents like me with not only the wrong form but the complete absence of an appropriate form (what I once heard the director of an autism school term, “The annual torture they put my parents through…”). The waiver form asks for various income information, proof of assets, other insurance coverage and similar matters. What it requires from parents like me, I learned the hard way, is a simple declaration across the top that my son Alex has no income and that his family’s income has no bearing on his receiving the waiver benefit. Nowhere does the form instruct me to write this down. In other words, the form asks for information that has no place on the form.

“Why yes,” I feel like telling Medicaid, “my son does still have autism.”

One year I handed the completed form to a Medicaid staffer and watched her amble behind the counter for a full minute, unsure of where or how to file it. God bless them for the money; god damn them for the cruelty.

“Medicaid waiver disabilities complaints” turns up nothing on Google. Is New York City special? I don’t think so: I once talked to a parent from Arkansas who said the only office in his state to take waiver paperwork, which must be filed in person, was an eight-hour drive away in Little Rock. What makes Medicaid act this way? Obviously we’re dealing with a fragment of government compassion that’s been dumped on an agency that, unsupervised, has no intention of gladly fulfilling a mission of compassion.

Yes, I know, better than the days of the Willowbrook, when there weren’t so many services and a good deal many more manacles. Now there are services, fueled by the government and because a few generations ago parents got together and demanded – by threat of vote – that there be programs to help those born like my son. Better than the days of Willowbrook, in the days, a high school friend observed once, “before the world became all about money.”

The Oakland County (Michigan) Community Mental Health Authority tightens its belt in the wake of a $21 million deficit caused by the cuts in Medicaid and rising costs and demands for services. The NYC Department of Education slashes $250,000 from a proven socialization program for middle schoolers with Asperger’s. In Limerick, Ireland, special-needs school kids endure oversized classes while their one-to-one teaching time has been cut by almost a fifth.

This is the way people with their hands on the money act when that money dries up, when the pile of nuts starts to seriously dwindle a long long time before the winter ends.

Eating at Me

Packing Alex for his 10 days of summer sleepaway camp goes pretty smooth until we get to the food: small bags of Cheetos, three bags of pretzels, a rack of Hebrew Nationals.

Family Packing Expert Jill tosses a bag of Cheetos and one of the sacks of Utz Extra Dark Specials in my direction. I bought this stuff for him to take to camp. “We’re not doing him any favors sending these things with him,” Jill says. She finds a second bag of Chee-tos and flings them at my feet.

“I wanted to send the things he likes,” I say.

“Maybe it’s time he learns to eat something else,” she replies. I’m just saying we’re doing Alex no favors.”

Well you’re certainly not.

“He’s got to get used to eating something besides this stuff-”

“Okay Jill, thank you!”

She mentions something about where I can go to eat Alex’s Cheetos. I know his diet’s limited, aside from hot dogs and chicken fingers (his coffee shop staple these days), little more than a parade of salt and big crunch that has seemed for too many years what Alex’s brain tells him is real food. It buys the peace, though it doesn’t secure what one recent academic study calls (at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2936505/) calls “nutrient adequacy.” Nutrient adequacy is whatever I find at The Vitamin Shoppe that dissolves in water in one of Alex’s little metal cups.

He’s never eaten many different foods. Baby food laced with heavy cream and maple syrup when he was still in a high chair. Jill herself started him on bacon in a Queens coffee shop, gave Alex his first brownie on a sidewalk outside a museum. For a while he ate the cheese off pizza. Ice cream and maybe yogurt. Once he mashed blueberries against his teeth. Once we gave Alex sliced watermelon but he just tried to piece the whole thing back together again. Nothing seems to have packed on the pounds like Risperdal.

Lately, though, Alex has lined up bowls of pretzels, Chips Ahoy and Goldfish as if making sure they’re there but at the same time expecting more and different events. He doesn’t seem to realize they’re food so much as just another something around him. Maybe he’s just bored. Variety for him is six months on chicken nuggets and then six months on hot dogs.

Yes, we’ve sort of just given up getting Alex to eat. He was bony before the Risperdal – and anything but sickly – and in the flurry of schooling him and finding education for the end of his childhood and the beginning of the rest of his life, we cherry-picked our fights. Being the parent of an autistic kid is bitch enough without feeling I failed in some other way, feeling I need to kick myself silently as I try to send him off for 10 days of hoping the camp nurse doesn’t have to call about my perpetual 3-year-old.

One does not push Alex easily. When we have spaghetti for dinner, he actually surprises me by coming around to fork some into his mouth, giggling until he chokes. He seems back on pizza, firing its name (“Peet-ZA! Peet-ZA!”), holding a slice up to his tightly closed mouth. Alex likes to eat in front of a mirror.

Bite of steak, Alex? Alex, how about a slice of tomato?

“Noooooo! No more! No more!” Up comes the arm to hold back unwanted food. Noooooooo ... Feeding Alex makes me realize why we shake our heads to indicate No: We’re making it harder for someone to put the unknown and unwanted in our mouths.

“Parents of children with autism spectrum disorders (ASDs) live with an ongoing challenge of ensuring their child with special needs is getting the nutrition he or she requires. And for many families, that’s easier said than done,” says the Today’s Dietitian article which should be titled, “How in Hell Is Alex Stimpson Going to Eat Enough to Stay Alive?”

Judy Converse, nutrition specialist and author of Special Needs Kids Eat Right, derides the “misinformation and misconceptions surrounding autism” and nutrition and calls for standards to screen for malnutrition in those with autism. We had such screens years ago, in a way: the spatters of food under Alex’s high chair.

“They’re left untreated. This leaves these kids with nutrition deficits that interfere with learning, cognitive ability, behavior, sleep, mood, and well-being – precisely the areas in which they can be most challenged.

“There is a shortage of professionals who really know child nutrition and know the issues of autism – the physiological as well as the developmental ones,” Converse says.

We once had a feeding therapist. Back then (and now too, for all I know, having given up), such specialists came few and far between. She listened to Jill describe the troubled eating of almost-toddler Alex and, deciding he might be a “challenge” soon afterward bounded into our apartment with such tools of eating therapy as pictures of bacon.

He didn’t eat much bacon for her, as I recall, nor even a picture of bacon. Later Jill got him to eat bacon in a diner. Shortage of professionals who know the issues of autism and anything else, from what I can tell.

(Read the article in Today’s Dietitian  here: http://www.todaysdietitian.com/news/enews_0411_01.shtml .)

Objectives

To define food selectivity and compare indices of food selectivity among children with autism spectrum disorders (ASDs) and typically developing children, and to assess the impact of food selectivity on nutrient adequacy.

Study design

Food selectivity was operationalized to include food refusal, limited food repertoire, and high frequency single food intake using a modified food frequency questionnaire and 3-day food record. Food selectivity was compared between 53 children with ASDs and 58 typically developing children ages 3–11 years. Nutrient adequacy was assessed relative to the Dietary Reference Intakes.

Results

Children with ASDs exhibited more food refusal than typically developing children (41.7% vs. 18.9% of foods offered, p < 0.0001). A more limited food repertoire was reported for children with ASDs than typically developing children (19.0 vs. 22.5 foods, p < 0.001). Only four children with ASDs and one typically developing child were reported to demonstrate high frequency single food intake. Children with a more limited food repertoire had inadequate intakes of a greater number of nutrients.

Conclusions

Our findings suggest that food selectivity is more common in children with ASDs than in typically developing children, and that limited food repertoire may be associated with nutrient inadequacies.

 

Morning of Plastic

 

Alex was to head for his school bus at 7:15. At 7:05, I heard those soft, dreaded syllables.

“Leopard?”

“Alex-”

“Leopard? Aw, lep – pard…”

“That’s okay, Alex. Let’s go get the bus. Alex, let’s go get the bus. Alex, c’mon.”

“Leopard?”

In the next 600 seconds, nothing else fills the universe but that 5-inch-long plastic leopard. And it’s missing. Nothing matters: Not the bus waiting downstairs, not going to school, not mom and dad yelling and not even Alex’s own realization that he’s doing something wrong.

I read once about what might go through the mind of Alex and people like him in such moments: Please don’t think less of me because I need to line things up in rows on all the furniture and need one of them with me sometimes. This is how I process knowledge. (Jill calls it “autism decorates.”)

Well that’s great, Alex, but you have a bus to catch now. Just grab some other animal. Here’s that raccoon you drove us crazy about two nights ago when you couldn’t find it. Remember? Why so goddamned picky this morning?

Just am. He knows he has the power to stop life. I despise him a little for whipping it on us so so often until we almost panic at again being caught between what Alex wants and what the world expects of him. Even if we find it, we accomplish nothing.

I start to yell – often my first parental impulse – but I’ve been here before. Nobody really beats autism. My tone is firm, stern. “Alex get yourself together and let’s go. The bus is waiting.” My tone is wise, deep, clear of panic.

A few minutes later, returning upstairs from telling the school bus to drive on, I hear Jill from as far away as the elevator. “You have to go to school,” Jill says to him. “I’m very angry with you, Alex. Very angry.”

She isn’t exactly yelling; nobody, not even Alex, could mistake her tone but she isn’t exactly yelling. “I’m sorry,” Alex says, patting her arm. “I’m sorry. Go to school.”

“No, Alex,” she says. “The bus is gone.”

Commonly some children with Autism Spectrum Disorders (ASD) autism “show an intense interest or preoccupation with an object, toy, video (or) task,” writes Dr. Judy Reaven, clinical psychologist and associate professor of The Children’s Hospital and the University of Colorado School of Medicine, on Autism Speaks. “It is sometimes difficult for parents to distinguish if the preoccupation is a characteristic of autism or a behavior associated with Obsessive Compulsive Disorder (OCD).”

Sure is, especially when Alex’s school bus just (LEFT).

“A number of psychological disorders frequently co-occur with autism. But it’s also true that some symptoms of autism overlap with those of other disorders such as OCD. So it can be difficult to distinguish those that are related to an individual’s autism from those that are part of another condition.”

Oh good, another condition. Alex’s many many animals stare at us from their rows on the edges of our furniture. As I’ve said before, they’re detailed down to the ruffles in the fur and the shine of the eyes, and somewhere in their rows is Alex’s idea of order. Sometimes he wants the “potomus” and sometimes the regular tiger. Whatever letters apply to what he does on these mornings, Alex’s condition seems to make him do something I really want to sit down and talk to him about.

I surrender immediately. “I’m sorry, I’m sorry,” Alex says to us, patting and patting our arms. “I’m sorry. Go to school?”

“No, Alex,” says Jill, “the bus is gone.”

“Go to school?”

“The bus is gone.” She hits gone with a deliberate pitch, parent-to-parent intonation for what I the experience dad see as pretend anger and concealed intent. “Go to school? Go to school?”

(Later I tell her about hearing her from the elevator. “If people don’t like it,” she says, “let them get their own child with autism.”) Surrendering makes me feel comfortable but I don’t want it to become habit. I catch Jill’s eye and shoot a half-hidden thumbs-up as she works him over with her voice, never yelling but stern, mixing needle and caress.

“I’m sorry. Go to school?”

“Alex, when you have somewhere to go you just have to go and then try to find what you want later.”

“Wantyouwant a-later,” he says to me. “I’m sorry, I’m sorry.” Pat pat pat. “Thank you, daddy.” Is he starting to realize, finally, that some action he lets himself take eventually hurts him? Isn’t realizing that how most people just get through a normal life?

We have a clean and quick subway ride to school. Alex even gets a seat. I stand over him and he offers a barrage of “I’m sorry…” before he says again, “Thank you, daddy.”

When we get off the train we’re about a block away from Alex’s school when he hoists his arm and says, “Puzzle?”

“We’re not stopping to buy you anything, Alex.”

“Puzzle? Puzzle.”

“C’mon.” We enter Alex’s school and start toward the stairwell leading up to his floor. On the way he swerves into a therapy room, dashing past the therapist (“Good morning, Alex!”) and to the cubbies of puzzles.

“OCD is often confused with the special interests or preoccupations characteristic of autism,” Reaven writes. “We have a wealth of research showing that cognitive-behavior therapies can help individuals with autism manage OCD symptoms. These include helping the person become aware of obsessive thoughts and compulsive behaviors and label them as such.”

Sounds like such therapy might work for Alex as soon as he learns to conduct a conversation beyond “’potomus” and “puzzle.” Overlapping layers sure bury stuff deep. Still, we do need something around here besides surrender.

When I get home on the leopard evening, Jill works on her laptop at the dining room table. On the other end of the table, flanked by the raccoon and the moose, sits the leopard. I point it out to her.

“Where’d we find it?” she asks. “I have no idea,” I say.

(Read Dr. Reaven’s full article here: http://www.autismspeaks.org/blog/2014/05/16/mental-health-awareness-month-it-ocd-or-%E2%80%98just-autism%E2%80%99)

 

Just Friends

 

Social service agencies have a good bead on Alex. Somewhere in the photocopied, crooked lines of one of his service plans, for instance, is the line, “Alex Stimpson doesn’t have a best friend.”

Alex does ask for Ned, for daddy and mommy and Aunt Julie and for grandpa’s lake house. In that house Alex can glance at most of his loved ones in one convenient corral and then go back to the iPad until it’s time for his drive to Michaels.

We headed to the lake house for the Fourth. Ned brought a friend to go swimming in the lake, canoeing and tipping over the canoe followed by more swimming in the lake. Aunt Julie brought a friend, Carl. Carl comes for many Independence Days. Ned also likes Carl very much as Carl lives in the South and usually brings explosives.

Alex notices fireworks. This year he seemed edgy, refusing to sit on the dock and continuing to try to tug me and Jill back to the house. In the glow of Carl’s explosives Alex’s face is sharp and attentive; his eyes catch the sparkly details against the summer night sky (and this year anyway, chose to disregard them) and he looks like an otherwise normal teen who just happens to rarely speak sentences.

You need sentences to get by in this world; you need sentences to make friends. “Autistic individuals typically have problems interacting in normal social environments. This leads some parents and professionals to think that they are naturally antisocial,” reads the abstract of “Six Principles of Autistic Interaction” (http://www.jamesmw.com/sixrules.htm) by James Williams, a Chicago-area writer with high-functioning autism.

I wouldn’t call Alex antisocial, more like social in a skewed way. He seems to speak someone’s name more when he’s not with that person. When school’s out, he often speaks names of classmates, usually preceded by “Bye bye!” or “Have a good weekend!” (He also frequently speaks his own name with those phrases.) “Bye, Ju-ann. Bye, Eloran” he says over a video of kids and a school bus; his finger touches the picture of the boy boarding the bus. “Bye, Eloran.” (Alex stresses the bye, puts a spin on the word as if to say, There. I took care of that.) Is this part of Alex truly friends? Part of him arranging classmates in his memory the way he lines up little plastic animals on all the furniture? Or just part of his general unraveling during school breaks?

When kids from the building drop by to see Ned, Alex hangs around, too, bobbing and weaving to a song on his iPad. If one of the visitors is a girl and it’s around Alex’s bath time, I position myself nonchalantly near the bathroom door to make sure Alex doesn’t fling it open stark naked. If Jill asks Alex to dance and share his music, he will for a moment, dutifully, then take his device and his joy and politely disappear into his bedroom. All for interacting,, he seems to say, to a limit. If something goes wrong Alex will come to pat your arm (sometimes a little hard) and pat and pat and say, “I’m sorry” even when it isn’t his fault.

“Non-autistic people often forget how complex social skills are, and how long it takes to learn them,” they write on the site Autism Helps (http://www.autism-help.org/communication-autism-making-friends.htm). Skills to make friends include knowing how to enter into other children’s activities or how to welcome other children into games or activities, and recognizing when and how to help others and seeking help from others. “Autistic individuals, if allowed to interact with other autistic individuals, develop complex friendships that are based on social rules that are unique to autistic relationships,” Williams writes. “When two autistic people who are fit for each other interact, there typically are several principles they use when socializing.”

At a New Year’s Eve party, Alex met Eric, who is also solidly on the spectrum. Alex had been weaving person to person, displaying his pretzels, strapping paper hats on guests both willing and un-, heaping chips on flimsy plates and scanning the kitchen for a back door to bolt through. When Eric arrived, Alex paused as if spotting an expensive hoodie of his favorite football team. He looked into Eric’s face and touched his arm.

They separated quickly but I don’t often see that spark of connection between Alex and most strangers. Maybe Eric reminded Alex of a classmate? Bye, Eric, bye…

“Their impaired ability to perceive and respond in socially expected ways to nonverbal cues can lead to conflict or being ignored by others,” adds Autism Helps.

“Maybe you can take Alex to the Mac store,” we tell Tina. “He can teach people how to use iPads.” He asks for the adult companions Jill and I hired to watch him and keep him company when we’re working: Tina (not her real name), Danny (not his real name) and Abby (not even close to her real name). He always asks for them by his name for them, his way of asking when he’ll see them again. He seems to look forward to seeing them, maybe because with them Alex is never something he is with many people. Alone.

Taxing Time

 

I wish could deduct those twenties I hand to off-the-books caretakers every week because my 16-year-old son can’t get off the school bus and be home alone for two hours. I also wanted to post this piece three or four months ago as everyone sweated over 1040s. Most days I was too busy, though, earning the money to pay the self-employment taxes on the extra money I earned to pay the taxes.

The National Association of Tax Professionals notes, “Because having a family member with special needs can be costly, it is particularly important that these families take advantage of all the tax deductions and credits to which they are entitled. Unfortunately, many taxpayers who qualify for these tax breaks are unaware and fail to claim them.” Maybe because he’s scurrying on a 90-degree day to find Alex only Utz Extra Dark Special pretzels or only Weaver chicken nuggets. God knows we all deserve some kind of break.

Here’s a roundup of tax deductions designed to help special needs families. Take a few on your next tax return and watch friends and neighbors with typically developing kids call you “lucky.”

Nutritional supplements are deductible when recommended by a doctor for treatment of a specific medical condition only. (What does the IRS have against The Vitamin Shoppe?) Special diets (such as a gluten- or casein-free) are partially deductible. Alex’s diet fits none of these conditions but I still figure Utz Extra Dark, $2.99 a bag ($2.49 on sale), say 2.5 bags a week times 52 weeks lops $300.70 off the top of my tax bill. I’ll eat the cost of both Alex’s Chips Ahoy! and most of the Chips Ahoy! themselves.

See a diet-deduction worksheet at http://www.tacanow.org/wp-content/uploads/2012/10/GFCFSF-Foods-Tax-Deduction-Worksheet.pdf . Attach a letter from your doctor to your tax return, the letter stating that your child suffers from a medical condition that requires a special diet.

Special schooling, including tuition or tutoring by a specialist to meet your child’s needs. Primary reason for the school must be to alleviate or remediate the disability.

Medical expenses exceeding a set percentage of your adjusted gross income (AGI). The IRS proclaims that medical care expenses “must be primarily to alleviate or prevent a physical or mental defect or illness.” I don’t make many medical deductions; for autism, there is no cure. It does seem that for tax purposes a sprained thumb is worth more money than a lifetime of watching Elmo and rocking on my couch.

For 2012 and prior years, medical expenses for most taxpayers were limited to the amount in excess of 7.5% of AGI; Obamacare bumps that limitation to 10%. Real change or a sop? Who cares?

Medical aids such as ramps or roll-in showers are fully deductible as medical expenses. Expenses that are merely beneficial to general health, such as vitamins or vacations, are not. I see the sense in that vacation one and yet, for special needs families, I sure don’t.

Car expenses for medical transport or medical trips. Actual gas and oil expenses, or use the medical mileage rate set by the IRS every year. (See  https://www.familychildcaretaxes.com/tax_tips_article.php?blRecordNumber=93.) You can add parking fees and tolls to the total but not insurance, repairs and depreciation to the car. Your personal depreciation is your problem.

Lodging for medical trips but only under certain circumstances and not to exceed $50 per night per person, including someone traveling with the person receiving the medical care. Meals are not deductible. Seems about right. They say the Dow will hit 20,000 by 2016.

Equipment or devices used primarily for alleviation of a person’s illness, such as special bedding or car seats. Does a new iPad count?

Distributions from a qualified retirement plan or individual retirement account before you turn 59½ and used for medical expenses that exceed 10% of your AGI do not incur the normal 10% penalty.

Home improvements to the extent they exceed any increase in the home’s fair market value. Certain improvements (such as altering the location of or otherwise modifying electrical outlets and fixtures) are deemed to have no affect (sic) on the home’s fair market value and thus, the full cost can be claimed as a medical expense. Don’t understand this but I suspect, as with much of our tax code, I’ll never see a penny from it.

Other items such as medical insurance premiums, diapers, lab fees, specialized medical equipment in the home, medicines, costs of professional services and advance payments for lifetime care of special needs dependents.

Impairment-related work expenses. Employees with a physical or mental disability that limits employment or one or more major life activity may be able to claim impairment-related work expenses on IRS Form 2106  (http://www.irs.gov/pub/irs-pdf/f2106.pdf) or 2106-EZ.

Parents’ attendance at a disability conference. Here you may meet a lot of people who know better than to call you “lucky” for these deductions but your food and lodging are generally not deductible.

Sounds about right. They say the S&P will hit 2600 in six years. Alex will be 22.