The Paperwork Queen

This morning, Ian and I drove about 20 minutes away to a doctor’s office in a strip mall in a town with a rough reputation. A form letter arrived two weeks with instructions to take Ian there to be evaluated by a government-appointed doctor at precisely 9:00am today to determine whether he really has autism and qualifies for government assistance. That was just the latest hurdle to get Ian qualified for social security disability payments.

Last Thursday, I drove to a different, yet also dodgy area of New Jersey, to get finger printed (no ink!) in another strip mall. Fingerprints were part of the laundry list of tasks that I need to do to get my substitute teaching license, so I can better support our public schools during their staffing crisis. The staffing crisis will be long over by the time I finish all the tasks necessary to get this license. On my chore list today, I have to sign up for a TB test and get transcripts from three colleges. I’ve been told that this whole process takes two months and costs $250 (could be more when I pay for transcripts), for a job that pays $115 per day.

Laid out on the trundle bed next to my desk are a half dozen manilla folders. On the front of each folder, I have a stick note with a list of tasks to be completed. I refuse to make paperwork my main purpose in life, so I’ll slowly tick through those chores throughout the month. Or sadly, throughout the year. Eventually I’ll get it all done.

Yet, I have to wonder why it’s easier for my husband to get a job on Wall Street than it is for me to get a job as a substitute teacher. With so much medical and education and whatever documentation on Ian’s disabilities, why must I start from scratch with a new bureaucracy to prove that he has autism and epilepsy? Why am I scribbling in little boxes on forms and driving to scary doctor’s offices for interviews?

These bureaucratic systems have not been modernized since 1963. I have to take a TB test to be a substitute teacher. Why? Are there really hoards of people in iron lungs beating on the doors of schoolhouses for employment? Why can’t one system talk to another? Why can’t the computers at the social security office upload data from schools and from the medical offices. Why do I feel like I’m filling out the same forms over and over and over again? It took less time for scientists to create a vaccine for Covid, then it will take to get Ian on Medicaid.

Why does all this suck?

Partly, it’s a matter of will. The system doesn’t really want to give out money to people with disabilities, so there’s no incentive to streamline the process. The system doesn’t want professionals or parents to take jobs as substitutes, so they made a system that’s so annoying that only people who are desperate for a job will complete the certification process.

There’s also a distinct lack of talent and brainpower in these bureaucracies, too. Good computer geeks are expensive. The government can’t pay them well enough, so only the worst geeks work in these industries. Bad computer geeks make bad systems. Good computer geeks use Facebook to listen to my conversations and then create ads for those products that appear relentlessly until I click, click, click and buy the item with my money slowly effortlessly from my bank account to theirs.

And there’s just good old bureaucratic rigidity and stupidity. Governmental departments have their own systems and set up high barriers to sharing information with each other, so it’s hard to get the department of probation, for example, to get information from the department of education.

There really should be an easier way to get people what they need – teaching certifications, drivers’ licenses, prescription drugs, housing vouchers, food stamps, mental health support. I’m getting through all this nonsense, and am trying to describe the process without looking for pity. For me, it’s annoying and time consuming, but for others, these lengthy, expensive, and cumbersome paperwork chores mean the delay of vital services. I know that I’m going through these systems with staggering privileges. In fact, I am going to use my staggering privileges to describe the situation in those scary strip malls and maybe get people talking.

24 thoughts on “The Paperwork Queen

  1. I look forward to your documentation though I am world weary of change. I think, potentially, for change to happen, a specific barrier has to be cited, rather than the general malaise of bureacracy. Which rule should we change, and how?

    I think the barriers to obtaining targeted government services is a deep seated American commitment to handing out those services and payments only to the deserving. It’s built by those who consider it a tragedy if one person who doesn’t have the moral right to the benefit by the terms we’ve determined gets it. One example that I’ve heard about from a lawyer who provides legal aid to those navigating the disability system is the differing treatment of disabilities that aren’t termed developmental: schizophrenia with an onset of 16 is treated completely differently than one with an onset of 30 (and, that difference is arbitrary and gender biased, since men usually show symptoms at younger ages than women).

    I think mixing together all the reasons for bureaucratic barriers can be a mistake, though, because teacher certification is probably different than Medicaid, though they may share common features.

    Say, for example, the TB testing and finger printing are probably not designed to be barriers to employment but the result of our extreme risk averse society and the bureaucratic response to legal liability. There was a substitute teacher with TB who worked in Arlington public schools in 2000, triggering all kinds of kerfuffle. The hiring of pedophiles of various sorts creates the background check/fingerprint problem (we had a teacher in a private school in our city who was discovered to have child porn and another who had an affair with a student in the school he came from).


    1. Ian isn’t going to get much from the government, because he’s smart. The doctor today established that quickly by having Ian recite numbers backwards and forwards. But hoping that he’ll get enough for a housing voucher or something. The OCD and epilepsy might help his cause. I have no clue. Ian did a great job today, but maybe too good of a job. I would have told him to act dumb, he can’t lie.


    2. I hate how mysterious the system seems, comparable to the mystery of college admissions. But, college admissions, at least at elite private schools rally are capricious, arbitrary, and entirely the choice of the colleges.

      Government benefits are supposed to have rules, but they are clearly un-understandable even to most of us. Even though I have no personal need, the system infects my brain, as an unsolvable puzzle where I feel like people are trying to trick all of us.


  2. “Last Thursday, I drove to a different, yet also dodgy area of New Jersey, to get finger printed (no ink!) in another strip mall. ”

    My dad once volunteered to coach a private school after school activity and getting finger prints was a long range adventure that eventually required him to travel to police stations 50 miles away. It turned out that the standard finger print takers couldn’t get good finger prints from him. No one had a good explanation — he did work on his family farm a bit when he was under 10, but not a lot, and since then he’s been an office guy academic. We tease him that he was a spy sometimes, but, he really wasn’t.


  3. A parent in WA state obtained information about out of district/private school/out of state placements using a FOIA request. In 2019-2020 (pre-pandemic) there were about 1000 such placements in WA state (including cross district, educational district, private within state, and out of state — which also means residential) at a cost of about 65 million. Of those about 10 million was spent on 60 out of state placements. I can’t tell which in state placements are residential, but my understanding is that in WA state, it is difficult to find in state placements and difficult to authorize them as a parent.

    The funding for these placements is reimbursed by the state, so individual districts don’t shoulder the burden entirely.

    I share the info because I found it of interest. I was told I can share.


  4. I’m struck by the difference between how we treat people with disabilities (something generally not their fault) with how relief was provided up here in Canada for people like me whose businesses closed due to Covid (also not their fault). I filled out one form and money was in my account in 5 days. Then I had to do that again each month, and I had to complete my taxes and repay a portion (that was owed in tax, although some people also had eligibility checks where they had to repay more.)

    That was it.

    I hire for child programs and we do have to do the police checks, which in one of our municipalities can take up to 6 weeks. It’s a pain. Our insurance requires it though.


    1. Well, here in the States money was provided quickly for business owners–and billions were stolen.

      It’s rather like rules in baseball. Much of the paperwork hassle arises because someone finds a loophole, or uses someone else’s identity to receive free money. The Scottish nephew who tried to claim his dead uncle’s benefits (with said dead uncle in tow) is not alone:


      1. TB is an infectious disease. People who catch it can be crippled for life. I believe we should vaccinate against TB, like the rest of the world, but we don’t. If you had received the vaccine in the past, you would have needed to have a chest Xray to rule out TB.

        In 2011, one student at a Colorado high school was diagnosed with TB. As a result, One of five household contacts had TB disease, and the other four had latent M. tuberculosis infection (LTBI). Screening of 1,249 school contacts (90%) found one person with pulmonary TB disease, who was fully treated, and 162 with LTBI, of whom 159 started an LTBI treatment regimen for preventing progression to TB disease and 153 completed a regimen. Only the index patient required inpatient care for TB, and TB caused no deaths.

        So the good news was, no one died. No one had to have parts of their lung removed. However, more than a thousand people had to be screened for TB, and more than 160 had to be treated. It really is simpler to test for TB to rule out a current infection.


      2. I find the argument that the benefits are so bureaucratic because they prevent fraud to be unconvincing as an answer for the difficulty. Indeed there is fraud in the disability benefits system, but I’m uncertain how much of the fraud is mitigated by the process Laura is navigating and I believe there will always be some fraud and waste and we need to consider that as a cost of providing the benefit to those who need it. How many people don’t get aid they need because of the hoops? and how much fraud is mitigated? There must be some analyses of those relationships.


      3. Yeah, I’m in some groups with US-based martial arts companies and they had a really hard time qualifying for that money – it seemed very chaotic at the time, although it may only be the people having trouble that were talking about it on Facebook etc.

        Up here there was some fraud for CERB (the individual payments – how much was out-and-out fraud and how much was just mistakes is still up for debate depending on your political leaning) and probably some for CEWS and CERS (wage and rent subsidies to businesses). They missed a few basic checks that really should be implemented for longer-term programs (and should go in the manual for the next disaster!) Best estimate is about 7% was given out incorrectly. A whole whack of people returned the funds though.

        But I think that the government will recoup a good deal of it. Compared to tax evasion the amounts were still low overall even though the numbers are eye watering in a lot of ways. I think there will always be fraudsters and we need to try to catch them. But I’m not sure I believe 100% is realistic or even desirable. Disability payments here are really low, maybe they are more generous down there.

        I guess the question is, what’s the cost of preventing fraud vs. the cost of fraud. I do think fraudulent claims should be pursued, but I’m not sure that the up-front difficulty level should be so high and shouldered by individuals as opposed to government. If you can’t qualify for help, you can end up homeless.


      4. There’s a good working paper on the PPP benefits and what happened to them:

        The abstract summarizes that the PPP program might have saved 2-3 million jobs at a cost of 170K-257K per job-year. The benefits were regressive, with 75% of PPP funds going to the top quintile of households.

        Those allocations are the problems I worry about, not inevitable bad actors stealing some of the money. The PPP program was especially shotgun, with the hopes of getting money out quickly, but the authors of the working paper refer to the lack of *effective* services and bureaucracy in the US (especially compared to other developed nations). That is, other countries were able to leverage their social safety nets to target aid. We didn’t have sufficient infrastructure in place.

        But we pay a lot of attention to the person who used a dead relative’s information to apply for benefits (which shouldn’t be all that difficult to prevent)

        100 billion is a lot, but that’s of 3.5 trillion, that’s about 3%, which isn’t terrible for a money allocated in crisis. I’m guessing there’s that level of waste in many programs (including, for example, military funding) and don’t want to take away money from people who really need it in because of blaring news stories about individual instances of undeserving people.


      5. I saw a bit of how the process worked for different small businesses, and the easiest examples, which were also the wealthiest examples, were small business with relationships with banks and documented income and revenue histories with the bank. In that circumstance, the banks had all the information, and were the verifiers of it.

        Bodegas, accepting cash, with unclear inventory, temporary employees, . . . . had more difficult documentation to produce.

        And some businesses (i.e. private schools) were pushed the relief funds by their bank. That is, the banks contacted the businesses with the forms basically filled in.

        I worry about this kind of service and the targeting to the top income quintile with these kinds of programs (including tutoring). I don’t care so much if the top income quintile gets value, as long as they don’t get all the value. I have a similar concern for the free tests — We need to have methods of getting aid to the people who don’t circulate the sites on the parenting lists and have easy access.


      6. bj said, “Bodegas, accepting cash, with unclear inventory, temporary employees, . . . . had more difficult documentation to produce.”

        You mean, businesses that had been cheating a lot on their taxes.


      7. Not necessarily cheating on their taxes, but yes, that could be one of the issues like the earned income credit is one of the most frequently audited tax breaks (say, in comparison to vastly over valuing properties or the historical preservation tax credit)


      8. Also, initially the PPP loans required the owner to attest that they had been materially affected by the pandemic. Some private schools held themselves to different standards than others on that question. We’re you literally going to lay people off? One were you just worried?

        Eventually they just asked for comparisons of revenue for small businesses, rather than the attestation.


  5. Our current family paperwork task is getting our 11th grader a learner’s permit for driving.

    My husband collected a fat packet of documents and they’re going to the local version of the DMV today. Our local DMV is reasonably efficient, but the process of obtaining a learners permit and driver’s license is incredibly complicated for teens. But nobody really wants teens to get on the road easily…One of the annoying features is that the process includes totally extraneous stuff, like anti-tobacco education. We also had to get a proof of enrollment document from school, because apparently minors shouldn’t learn to drive unless they are enrolled in school or have a high school diploma or GED.

    Our college kid is less interested in driving, so she hasn’t started the process yet. It should be easier for her, as she’s older, and not subject to as much bureaucratic stuff.


    1. My husband drove our 11th grader to the DMV 20 min. away after school today. It turned out that learner’s permits are by appointment only. This was not on the state website, although it might be on the local one.

      We need to make an appointment for this and it needs to happen soon. We are time limited, because at some point (a month?) the 11th grader’s proof of school enrollment expires, so we would then need to go back to the school and get a new proof of enrollment.


      1. God forbid that an under-18 high school dropout with no GED should get a learner’s permit.

        That would be terrible.


      2. Well, they’d just have to wait until they are 18, and there are a number exceptions (in WA, anyway). We had two cousins who waited until 18 to get their licenses and there were basically no hoops; they just had to pass the test. I thought that was kind of scary, but they are both good drivers.

        Also, it cost $2000 in insurance when our 16 yo got his license. No cost when he was learning, but when he got his official license (on his 16th birthday).

        I just looked, and kiddo has now been driving for three! years (he got his learning permit about shortly after his 15th birthday). Wow, time goes fast. And, it was a big pain to jump through all the hoops but now we’ve forgotten them.

        Driving changed everything for us. More so for our second, because he had access sto his own car (I had finally replaced my nearly 20 year old car, and so he had my old car). An attempt at humor along that theme:


      3. Our web site was specific enough that I managed to understand what I needed, but lots of people were at the site looking for things you couldn’t get there (car tabs, learners tests, driving tests). Most folks in WA now get tabs at private shops and learners tests & driving tests are administered by private businesses too, partly fed by the under 18 learner system.

        The business my older kiddo took her classroom lessons & driving lessons and test from used to own a pizza shop. They decided they would have a steadier, easier to run small business being trained in providing classes for teens to jump the hoops for a license.


    2. I can’t remember 16 and the first license, but the paperwork burden is significant for the enhanced driver’s license (a federal plot to intervene in the state licensing to produce a more robust identification document, at least partially targeting undocumented people). The deadline for having one to use for flying and other federal requirements keeps being extended.

      I renewed mine in 2019 and while waiting in the DOL, I so many people struggling with the documents (including some with disabilities, others who just had to keep going home to find new things, some with student visas . . . .). It was an enlightening experience (My phone battery had died and I hadn’t brought a book, so I had nothing to do but eavesdrop).


  6. The doctor’s appointment must be a New Jersey requirement. Nobody with DD applying for support in Ohio has to go to a doctor for anything, though the Ohio County DD system/Ohio Medicaid have you/your adult child sign releases allowing them to contact doctors, school (if still enrolled in public school) and any private therapists (Speech, OT, pyschologist, behavioralist, etc.) to verify the disability.

    Social Security, as a federal program, is the same process everywhere but the County/Medicaid programs that states run can vary widely.

    When Susan Senator was keeping up her blog, she wrote once about an effort in her state, Massachusetts, to expand eligibility for DD/Medicaid services to include all people with autism; Massachusetts required that the person have both autism AND intellectual disability — just plain autism with a normal IQ wasn’t enough.

    That ended any fantasies I ever had about moving to Boston.


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