Because sometimes politics is personal

A small part of the reason I have not posted so much about pediatric stroke survivors this month is that talking about support for pediatric stroke survivors immediately becomes political.  It's hard to talk about special education without mentioning Ms. DeVos and IDEA; in-school services without Medicaid payments; medical treatments without how they are paid for; or future job prospects without discussing the limitations of pre-existing conditions.  Besides not wanting this to become a political blog, I am hardly an expert and enough of a rationalist to point out that 1) I haven't read the relevant bills and policies and 2) even if I had I would have no real idea about what they would mean in practice 12 years down the road when Aster will be finishing high school.  So I've stayed quiet here, knowing that my congressman is not intentionally voting to limit my career options and Ms. DeVos's purpose is not to prevent kids with disabilities in rural Oklahoma from becoming scientists.

But maybe that's part of the problem.  Silly as it sounds to suggest that some of this legislation is about me, a healthy, wealthy, educated, employed white woman, maybe some people need to hear more personal stories about how things affect "us".

Three out of the four members of my household have pre-existing conditions.  My pituitary adenoma is not currently being treated (for medical reasons) but is being monitored.  I really don't want to return to the time when I make medical decisions not to seek advice based on knowing I'll be changing jobs.  Yes, before the ACA people with cerebral palsy and pituitary adenomas did get jobs and insurance, but I know of many people relieved not to make major life decisions (marriage, sticking with a bad-fit job, starting a business) based on if they are insurable or not.

With too many parts it is hard to focus

Aster's long term health and vocational outcomes are greatly increased by regular and early attention.

Because of the Individuals with Disabilities Education Act (IDEA) Aster is assured a free, appropriate public education.

There are no other schools within 50 miles better equipped (or equipped at all) to educate Aster.

Special Education services (and sometimes school nurses) are largely funded through Medicaid reimbursements.

So, yes, these things are personal.

[I almost started the second rant about how science education and higher ed funding are personal, too, but I am getting to angry as I sit here.  Ugh.  For the record, I must point out that I have no problem with my children coming home from public schools with high quality coloring books and teaching materials produced by oil and gas companies.  However, I can't help but feel perplexed (at best) that 1) my son's second grade teacher told us that they had no time for science in second grade (and she doesn't like it anyway) but they had time for a whole Petro Pet curriculum 2) nowhere on the Petro Pete curriculum does it say who funded it 3) at the same time my son was coming home with Petro Pete coloring books, the state capitol was being surrounded by oil and gas vehicles as some legislators threatened to raise drilling fees  to balance the budget. So 4) the state legislature passed a budget that does not raise any revenue from the oil and gas companies that have funds to make curriculum, coloring books and pay for field trips to the science museum while the budget dictates continuing to underpay K-12 teachers and further cuts higher education.
By the way, the only way that my institution has stayed solvent during multiple years of significant budget cuts from the state has been to 1) increase tuition and fees [not pleasant when the mission of the regional institution is to provide opportunities for people in the (economically struggling) region and 2) increase enrollment from international students.  Yes, because the state legislature can't bring themselves to raise revenue, the economy of my small town rests precariously on welcoming Muslim students to my overwhelming Baptist and sometimes intolerant small town.]