Social Insecurity

     Is it possible we did too good a job of helping our daughter, Sarah, partially emerge from autism for her to qualify for disability payments? Getting supplemental Social Security Income for Sarah wasn’t going to be easy, our Disabilities Advocate, told us. Margaret was helping us fill out the daunting application papers required.  As I watched Margaret type into the computer all of the doctors, therapists, treatments and special ed schools, Sarah had attended, I remembered  them all. Just as I recalled each of Sarah’s many social, emotional and intellectual challenges and how we struggled to deal with them. How could it be that with all of these interventions and modest successes  my daughter was  a 22 year old woman who couldn’t get a job, manage money or live independently without some outside support?
     The application process took a couple of hours, but it felt like an eternity of Chinese water torture.  This was the paperwork I’d been delaying for years, hoping against hope that a transformative miracle would happen and Sarah would make enough progress to live independently without government assistance.  This was my daughter’s own dream before it became mine.  “I want to do it myself.  I don’t want help.”  These two sentences were Sarah’s childhood mantras.
     Ever since Sarah started school, I have been her PR rep, spinning the best version of her, hoping  to get her into the best special ed schools with the highest functioning students.  Henry, an adoring father and skilled attorney, successfully sued the Board of Education for 14 consecutive years, so that Sarah received funding to attend the best special ed schools in New York that would admit her.  After so many years of emphasizing Sarah’s strengths, it was painful for me to reverse course and highlight her weaknesses to convince the bureaucrats that she needed and deserved government assistance.

     The truth is that Sarah exceeded most people’s expectations in a thousand ways.   Sarah graduated cum laude with an Associate’s Degree from Landmark College.  At Landmark, the entire student population has disabilities, but most of them are not on the autistic spectrum.   On the strength of my daughter’s transcript—which doesn’t reflect all of the hours of extra tutoring or classes she could easily have failed— she was accepted into Pace University’s OASIS Program, which supports high functioning students on the autistic spectrum.  Better still, our daughter was offered a $17,000 merit scholarship. With her extraordinary effort, Sarah has made the Dean’s List for the past two semesters, and is on track to graduate with a liberal arts degree in May of ’14.  If she succeeds—which Henry and I both fully expect—it will have taken her 5 years (including courses every summer)to achieve what most neurotypical students finish in 4 years. Nonetheless, it will be a stunning accomplishment. But perhaps too stunning for her to receive supplemental Social Security?

     What the social security office doesn’t realize is that, despite her academic achievements, Sarah  is still challenged in thousands of ways neurotypical kids are not. For example, my daughter’s understanding of money and budgeting is rudimentary at best.   An eighth grade teacher once reported seeing Sarah throw crumpled dollar bills into the trash, evidently thinking they were garbage.  A few years ago, she put the decimal point in the wrong place on the computerized taxi screen and paid the driver $100 instead of $10 on her credit card.  Sarah never said a word about it and—surprise, surprise--neither did the cab driver. 

     Life skills involving cleanliness and grooming are still shaky for my daughter.  She showers, brushes her teeth and washes her hair every day.  But what happens when she runs out of shampoo or toothpaste?  Nothing.  She doesn’t tell me or go buy more. She simply stops using that item.  Before  Sarah moved back home for her last year of college, she was more than erratic about her laundry.  Even if her clothes were dirty or smelled, she kept on wearing them.  Now at home, where she does her laundry every week, she still confuses clothing that belongs in the hamper with clean clothes that belong in her drawers.
     Sarah is still making progress, but I will never live long enough to teach her everything she needs to know. No matter how hard I rack my brains, I can’t anticipate all the skills and knowledge she will need for a lifetime.  I taught her how to refill the many prescriptions that keep her mind more balanced. And she knows to take her birth control pills on the correct days, but there are still glitches that no one could think of in advance.  For instance, Sarah tried to fill her Abilify prescription at the CVS on Fulton Street, and the pharmacist gave her blister-packed samples because CVS was out of Abilify.   Unfortunately, the blister packs were impossible for Sarah (and later me) to open.   Worse still, Sarah didn’t think of asking for help; it just didn’t occur to her.  Luckily, I discovered the samples in her bag while looking for something else. Will the people at Social Security understand the significance of that?

     What about when we tell them Sarah’s experience last year during super storm Sandy?  Our daughter made no effort to contact us, even though she was alone in her dorm at Pace University without electricity or water.  Although there was no land line phone service, Sarah was able to get meals and charge her cell phone and laptop in one of the main buildings.  Why she didn’t ask security to help her contact her parents to tell us she was safe, I’ll never know. Instead she walked up and down eleven flights of pitch black stairs, using her cell phone as a light. It was after Sandy that I admitted to myself that Sarah would need supplemental social security and outside services.  We won’t always be there to come to her rescue.

     Our interview with Social Security was at 11AM on Friday, September 13th. We needed to bring Sarah on a day she didn’t have class, and Yom Kippur meant it would be slow at Henry’s office. Yes, I know Friday the 13th is unlucky, but going there was already rock bottom for me, so how much worse could it get? 

     We arrived ten minutes early and sat down in pink plastic chairs.  The armed guard who helped us check in tried to warn us: “We have a new system now and the people here are still learning…. We’re moving in another week…. Friday is a bad day because we’re short staffed.”

     All the budget cuts and government gridlock that led to sequestration were having a direct impact on the Elisofon family.  Fridays are furlough days, so there was only one interviewer instead of the usual six.  Further, while all of the employees went out to lunch, we sat in our plastic chairs and starved.  Food and drinks weren’t allowed. For 45 minutes we sat in the waiting room listening to a tone deaf man singing. When he got called for his interview, an elderly couple sat down directly behind us, and I heard the man chomp loudly on chewing gum.  Not only was he chomping, but also smacking his lips. Chomp, smack, chomp. No wonder there were armed guards and bullet proof plexiglass separating us from the clerks and interviewers.

     As the day dragged on Margaret, our paid advocate, wanted to reschedule.  She tried calling a supervisor, but no one answered the phone.   Finally, I found myself pacing in front of the plexiglass and refusing to sit down until we were taken.   Margaret said she’d “never seen anything like this before.”

     Finally, at 1:20PM a sheepish young man ushered us beyond the plastic barrier.  He went over our paper work, asking questions about each doctor and therapist.  He also questioned Sarah about her finances and if she understood why she had come to Social Security.   We had prepared her for this by cautioning Sarah not to argue when we cited her disabilities, but to provide honest answers to the questions about the challenges in her life.

     Our 11AM appointment with Social Security ended at 3:15PM, 15 minutes after the Social Security office was supposed to close.  On our way out, we saw that the waiting room was still full. The man chomping his gum asked hopefully, “Do you think they’ll take us today?”
       Shrugging, I made a beeline for the elevator.

      Margaret warned us that we would have to wait a week before hearing from Social Security.   She thinks we have a fighting chance.  But I’m not so sure.

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