I’m reading commentary on Donald Trump’s budget with a certain amount of dread. It’s exactly what he promised. We shouldn’t be surprised, but still I’m depressed.
Let me just focus for a minute on the funding for special education and services, because it’s very much on my mind today. I put aside the rest of the day to find appropriate programs for Ian for the 2-1/2 months of summer.
Ian’s public school will take care of him for a half day through July, but that’s all I have. Without lots of stimulating activity during the summer, he’ll retreat to his computer and have no socialization. He’ll be mute by the time we get to September. There are no state sponsored activities that are appropriate for him, so it’s going to be lots of out-of-pocket expenses with me not working at all, so I can drive him around.
I’ve been calling the financial aid offices at several colleges if see they’ll take into consideration our special education expenses when putting together a financial aid package for Jonah. They won’t. They also don’t care that we wasted too many years in graduate school and didn’t get started on new careers until our mid-30s.
When things get tighter for the special education community, we go into isolationist mode. We take care of our kids first, and we stop advocating for the greater community. I know very well that as tough as things get for us, it is NOTHING compared to families with less means and with kids with more severe problems. (I have horror stories.) But the responsibility of a parent to care for his/her kid first. I can’t advocate for others, if I’m scrounging around for my kid.
Things are going to get tighter for families like ours. For families with less means and more severely disabled kids, situations will become dire.
I need a little more time to read everything and figure out specific details.
How will the cuts in the budget impact you and your family?
UPDATE: What to be depressed? Look at this chart.
Apt. 11d 
Whatever shape, form or level the cuts take, only some of the effects will be felt right away for us. At 19, my kid is still in his transition years; those adult years, from 22 on, are close enough to see the broad outlines of but we are not there yet.
When you are navigating your kid’s childhood, it is all-encompassing but the truth is, all of our kids will be adults a lot longer than they were children. And we aren’t going to be around for all of them unless they die before we do.
Cutbacks to supported living agencies, day programs, and the like won’t mean anything directly to me next year but five years from now?
Here is an example. There is a terrific non-profit that just happens to be in my neighborhood that provides recreational activities for young adults with DD — lots of classes and clubs. I’ve met the director, she knows my kid, and she says he’s a great match for her program (my son, like Ian, is in that murky area of high-enough functioning that most DD programs are not sophisticated enough for him, while at the same time, he’s not adept enough for non DD programs).
This agency survives on Medicaid Waiver funding. Block-grant Medicaid (something that might very well happen even if the ACA more or less survives) and it is very likely that the resulting cutbacks could put this agency out of business. It will be seen as non-essential. The hours that my kid could have spent there will be spent instead at home in front of the computer. Except it won’t be for a mere summer, it will be for past the foreseeable future.
I am also looking forward to the day my kid can move out. I think he could manage quite well sharing an apartment with a well-chosen roommate or two, and support personnel dropping by on a regular basis to trouble-shoot. How are the agencies that provide this sort of service going to fare? They again depend on Medicaid Waivers, and to a smaller extent, SSI.
The cutbacks are going to be hardest on the kids like Ian and my kid because they are relatively less needy, and as a result, will be the first to be pushed off the rolls.
We can substitute for only a small portion of what will be taken away from them. I cannot as an individual do what a housing or transportation or recreation agency does (as far as I can tell, here in Ohio, job development and coaching services come out of a very different pocket).
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“I cannot as an individual do what a housing or transportation or recreation agency does (as far as I can tell, here in Ohio, job development and coaching services come out of a very different pocket)”.
And that is exactly why these proposed cuts are so short-sighted and mean-spirited. Individual families can’t provide that level of service for their kids. All that collective knowledge and experience that will be lost – it’s heartbreaking. All the wasted energy and time spent reinventing the wheel and patching together substandard solutions person by person, family by family.
If there’s any remote shred of a silver lining, it’s how they’re making explicit how cruel and nasty they’ll be, how far they’ll go just for a few more bucks. And how happily they’ve all jumped on board.
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I am surprisingly angry about the budget. It’s cartoonishly evil–let’s cut Meals on Wheels and Headstart so we can cover an extra toilet handle for the military.
I’ve been directly affected by cuts for research, mainly in the form of disappearing grants. I’m really concerned about the cuts to the State department. Lots of my work, including several years of my language training and a year of fieldwork, has been funded through the State department, and that’s probably going away. My fiance is on a State department fellowship right now, studying internet hackers in Eastern Europe. He’s supposed to work for them when he finishes, but that looks like it might not happen if the State department is gutted. Most of this won’t affect me directly, because I’ve already received the funding and grants, but it makes me really angry. Giving graduate students language training in critical languages or funding a year of social science research somewhere important is really really cheap, and the payoff is high. Having Chinese, Arabic, Russian, and Pashto speakers in the State department is important. Having area studies experts is important. If we get rid of all of that, we save pennies to make the US much less safer. The move to belligerent ignorance is one of the things that scares me right now, because it’s not obvious to ordinary people so so far there’s been little public outcry, but this could be the difference between a nuclear war or not with North Korea or China.
I’m lucky though. My partner and I have other options. Think tanks or corporations will want me if academia or the government doesn’t. My partner can go into the tech industry. He’s an EU citizen, so worst case scenario we can move abroad.I don’t have to worry about the future of my children or that I might die (unless we get a nuclear war).
I also worry for my sister. For the past three years, my sister has nonstop migraines that so far appear to be untreatable. She has to take a cocktail of expensive medications just to get the pain to a manageable level and keep the vomiting down. She has tried every single experimental therapy in existence just to get a few days or maybe weeks of relief from the vomiting and the worst of the pain. She is currently on the Obamacare exchange, and is worried that if her coverage is removed, she will be in such unbearable pain she will be tempted to commit suicide. She is several years into the process of applying for disability benefits, which now could be cut. Again though, she is lucky. She has a husband who could try to find a different job for better insurance coverage, and my mother or his parents would take them rather than let them go homeless if they had to sell everything they own to pay for her medical care. I know most people with a disability or chronic pain don’t have those options.
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I know it’s the thing to personalize the effects of social policy, talk about how it directly affects us. However, I am far more concerned with how it affects our society overall. The minute we start talking about individuals, we can begin a moral calculus over whether that individual is “deserving” of the benefits of social policy. We as a society live in a place where all humans are deserving of a social safety net, regardless of whether some people are jumping off the cliff or whether they’re being pushed.
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Yup – we all benefit if everyone is educated and healthy and safe.
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OK, here’s an example of what I mean about the dangers of focusing on individuals in debates over social policy: the Graeme Frost/SCHIP thing:
OMG his parents had granite countertops they made BAD choices NO SCHIP FOR YOU!
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Yes, there is a line between using a personal story as an illustration of a larger truth, or to spice up the presentation of otherwise dry data, and making the story the end point about specific individuals.
I am in an Indivisible group and we have an appointment at our Congressional Rep’s office in two weeks. Right now, we are anticipating talking about health coverage, and we are told to bring our stories.
I am finding this somewhat preposterous. Do we really think that our Representative’s policy director is going to be swayed by a story like that of BI’s sister? (which is to be sure, a very sad one, and I sincerely hope a successful treatment can be found.) That makes it seem like we are asking for special dispensations. We’re not appealing to royalty for mercy on ourselves. That’s not the system we live on.
You can’t make policy that way. It would be a totally abritary method.
You can use a story about a family that went bankrupt from medical bills but then talk about the sheer numbers of similarly situated families, and the overall drag produced on the economic lives of the rest of us by their preventable bankruptcies.
For my part, I have an appointment to talk with someone from our local DD board to gather actual numbers to present. I want to show how Medicaid Waivers are used, and why it costs $40,000 a year for a placement in a group home. I don’t think predicting that my child will otherwise be reduced to staring at a computer screen is going to compell anyone.
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I believe the idea is that personal stories work in the way changing attitudes towards gay marriage worked–once people could tie an issue to a face they cared about,* people’s attitudes change. I agree it’s not very convincing for certain sorts of policy, nor should it be. I do think there are places for judicious use of personal interest stories as PR techniques, along the lines of the saying (I believe from Stalin) that one death is a tragedy, a millions deaths is a statistic. Of course, anecdote shouldn’t take the place of data in arguments or policy choices.
I do think that the left, especially the young and idealistic left, overestimates the value of “raising awareness.” Plenty of people don’t really empathize with the plights of others.
*People have suggested this for the issue of abortion, simply because the sheer number of women who’ve had abortions (1 in 3) means it’s hard to demonize those sorts of women as the Slutty Other once you realize your mom, your aunt, the woman who sits next to you in church, or your coworker have all had abortions. With something like gay marriage or abortion I think this sort of thing would work better.
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I see two goals of the personal stories. The first is to show how the numbers work out for individual people. I find I need that connection, even though I’m a numbers person. The second is to personalize the relationship between the individual being affected and the people making decisions (like the gay marriage issue, and issue I saw myself evolve on, as I got to know individuals and individual stories). But, the key to the second point is that the we have to be willing to make a connection with the individual, not see them as an “other”.
The viciousness with which individuals are attacked is a side effect of the modern communication age and an attempt to disrupt the second goal by casting the individual in the story as someone different from the listener.
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The cuts to the NEH and IMLS have a direct impact on the family business, providing digital services to libraries, archives, museums, and scholars within the university. While the specific projects we work on that receive NEH funding–the part of our paychecks that actually comes from the NEH, I mean–make up less than 10% of our income, the uncertainty and pessimism that’s fallen on our customers really does have an impact. At present I’m working on a piece addressing the question “what happens to our digital work if we all lose our jobs?”, which essentially summarizes conversations I’ve been having with my peers.
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I think that none of the budget machinations will effect us directly. But, there can be all kinds of secondary effects, some of which could be significant for us (the government closure in 2013 had a significant effect that was very much a chain of almost rube-goldberg connections).
Although I’ve argued in the past that I think we should believe that the president will do what he says he will do, I don’t think this budget will be enacted anywhere near where it stands. For example, I think NIH has sufficient political power, even in a government completely controlled by Republicans that it will not suffer a 20% cut. A 20% cut in the NIH budget would be huge and significant, though, and have all kinds of ramifications throughout university systems. I do think that a budget like this one has the potential of creating infighting to the detriment of all, and that weaker political interests will be thrown under the bus. When universities look at the bottom line of their budgets affected by a 20% NIH cut v a 40% EPA cut, I think they’re going to put their might behind saving the NIH funding. Thus, suggesting it at all works, towards the goals the white house wants.
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If the Trump administration succeeds in zeroing out the Woodrow Wilson Center, I think that Germany should buy the whole thing, or perhaps, to use the terms of the League of Nations, hold it in trusteeship. I’ve mentioned it to a few people here in Berlin, who may not realize that I am perfectly serious. America gained a lot of intellectual capital when gangsters took over the German government back in the day. Germany could certainly offer a home to American researchers their government doesn’t want.
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Trump is a total disaster and needs to go now. I just begged my Trump-supporting friends and family on Facebook to take advantage of Comey’s gift to them yesterday and Get Out Now.
Also, I know friends don’t let friends read David Brooks, but I was looking at the Times’ front page and saw the headline “The Unifying American Story,” and I got sucked in and it’s actually kind of interesting.
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