Stop Kumbayaing and WAKE UP!

Dear Representative or Senator,

As a constituent who cares deeply about issues affecting people with intellectual and developmental disabilities (I/DD) like my daughter who has refractory epilepsy and severe developmental disabilities, I have concerns about the Tax Cuts and Jobs Act in its current form because of its impact on services for people with I/DD.

I cannot support the tax reform legislation in its current form because:
- The changes proposed to the charitable tax deduction reduce the ability of nonprofit disability service providers to fund important services for people with intellectual and developmental disabilities (I/DD)
- As the only other federal support for Medicaid long term services and supports, the House passed legislation removing the medical expense deduction could put significant strain on the Medicaid program that serves people with I/DD
- The changes to the unrelated business income tax (UBIT) impact the ability of nonprofit providers and their associations to maintain limited but important revenues
- The changes to state and local taxes would have a negative impact on certain states that obtain significant funding from these taxes for services for people with I/DD
- The House legislation's elimination of tax breaks on bond financing could significantly undermine the financing for affordable housing for people with I/DD
- The addition of $1.5 trillion to the national debt may be used to justify future cuts in Medicaid, Medicare, or Social Security which are the main federal programs that support people with intellectual and developmental disabilities.

As your office considers how to restructure our tax system, I wish to share with you tax reform principles by the American Network of Community Options and Resources (ANCOR), the national trade association for disability service providers. These principles seek to ensure the stability of services and supports that people with disabilities rely on to participate fully in society. I hope you will consider these principles and the well-being of people with intellectual and developmental disabilities as legislative tax discussions advance.

ANCOR Tax Reform Principles
1. Any process that includes changes to Medicaid should be accomplished through a process that affords sufficient opportunity for legislators, advocates, and constituents to review and provide feedback on the proposal and legislative language prior to passage.
2. Individual or corporate tax cuts or expenditures must not be paid for by cuts to Medicaid, Medicare, Social Security, or other mandatory or discretionary programs that promote independence, inclusion, and community living for people with disabilities.
3. Tax reform should not decrease revenue to an extent that revenue is insufficient to continue to fund the programs and services and supports for people with disabilities at current levels or above.
4. The charitable deduction should be maintained and improved for the non-profit sector which provides the majority of services and supports for people with disabilities.
5. Unrelated business income tax should be held harmless to protect the vital role of nonprofits and associations in the disability services sector.

I look forward to working with you to strengthen community services for people with intellectual and developmental disabilities - please reach out to me if you have any questions.

Sincerely,

Elizabeth Aquino


#RESIST

Here's a link for you to send your own letter.

Here's where you can call with a script. Do it. I beg you.

The Congressional Switchboard can help you identify your members of Congress and will connect you directly to their office - dial it at 202.224.3121 or 202.224.3091 (TTY). A short script you can use is: "I am a constituent who cares deeply about issues affecting people with disabilities. If you do not already oppose the tax reform bill coming for a vote today, please do so because it has provisions that would harm services for people with disabilities. Thank you for your hard work answering the phones."

Active Empathy and Some Prom Photos

Have I told ya'll about our Indivisible group called Active Empathy? Indivisible is the national group that is resisting Trump's agenda in a methodical way. Active Empathy is what our local group is called, and a small group of us, including the four gorgeous founders, meet weekly to plan the BIG meeting which happens to be this afternoon. It's our second one, and we hope to galvanize people to really participate in the resistance. If you're local, please come or stay involved by getting our weekly emails. We have a facebook page and a website that are works in progress.

Activeempathy.org

Yours truly is heading up the Healthcare/Disability Rights working group. I'm using today's meeting to encourage people to be educated about healthcare law as it now exists, to know what Medicaid is, what block grants are, what single-payer insurance is, etc. etc. Education is everything, isn't it? It's everything, and we live under a regime that is not only ignorant but actively promotes ignorance. We're also, as working group heads, going to give our groups at least one ACTION item to complete this week. I know from the years of advocacy work that I did in disability and special needs healthcare, that doing one thing, however small, is essential and that this one thing should be done within days of getting all charged up and excited. One small thing.

So that's what's happening around these parts today.










On another note, I don't think I showed you these photos of my gorgeous son and his date from the prom last weekend. They appeared on Instagram and Facebook, but most of you who read the old blog are sane avoiders of social media, so here's my pride and joy, the light of my life, the little boy turned to man:

Pretty Girl

I have no idea.

I have no ideas.

Pretty girl.

Pretty smart girl.

I'm thinking about a lifetime of relax, calm down, I'll pay you $1,000 to be quiet, You're such an exaggerator, Your head's always been in the clouds, Get your head out of your poetry/ass, Book sense isn't everything, relax, calm down, you're crazy, you're basically a pretty girl with some smarts.

Elizabeth Warren in the hallway outside the hallowed chamber, still reading.

The Republikkkans have prioritized voter suppression, and they've specifically targeted black people and other disadvantaged groups. The Supreme Court, with a majority of conservative justices, gutted the Voting Rights Act and literally opened the gates to restrictions and obstacles that some could argue were the main contributors to how we got here. Here.

How we got here. 

The most intelligent members of even my high school class are arguing with, literally, the least intelligent. The least intelligent are gloating, smug, rich, KKKristians. Gun-lovers. Brain, they hissed back in the eighth grade when I walked down the hallway with my stack of honors. Brain as derision.

Make Amerikkka great again. 

The appointment of the racist Sessions and the billionaire Kkkristian DeVos took the breath out of me. Not only because he's an old-school racist but because of his stance on medical marijuana. He's not into it. Not only because she's intent on increasing God's Kingdom but also because she is purposefully ignorant and disdainful of the laws protecting the rights of the learning and otherwise disabled.  She's not into it. Will I have to stockpile Sophie's medicine? At least Sophie ages out of the public school system this May. It gives me little comfort to be living in the greatest state in Amerikkka, because I know just how long many of my comrades in the disability/seizure/epilepsy world have been waiting and hoping for an easement of marijuana laws. They're not getting it now. Their children will suffer, perhaps die. It gives me little comfort to be living in the greatest state in Amerikkka because I know just how dependent many of my comrades in the disability/learning disabled world are, how young their children are, how they are thriving in schools responsible to the law that will, perhaps, not be enforced.

Even as I type, I'm getting my breath back.

I'm going to the pool now, will dive in and begin the steady strokes. I'll hold my breath, blow out through my nose and twist my head to the side. I won't gulp in air but rather train myself to keep breathing, steady, propulsive. Forward. Breathing for myself and breathing for others.



















#resist

WOKE AF and What the Neurologist Says

Today was our quarterly visit with The Neurologist.  This is generally something I prepare for by downing three Bloody Marys and a chaser of frozen vodka (see the other 4,321,896 posts I've written on the subject. They generally begin with a photo of the waiting room wall with the CONQUER and TRIUMPH sign over the list of wealthy donors), but I'm not going to complain today because -- you know -- I'm grateful.

We've got health insurance (for now) and The Neurologist is very helpful as far as getting those pesky pre-authorizations that Anthem demands every month for the drug that Sophie has been on for EIGHT YEARS. When the Fresh-faced Pharmacist of the Month rings me up at the CVS, he inevitably asks me do you realize how expensive this medication is? And I say I do but tell me again how much it costs. And the young man says, Today it's $435. And I say that should be covered by insurance. And he says, Well, it needs a pre-authorization. And I say, Again?We've been getting this medication for eight years! And he says, It's a controlled substance, ma'am. And I say, Yes, I know that but I'm trying to grift the system here and keep the drug wars going by having benzo parties with all my friends. And he says, May I see your ID? Reader, I'll leave it up to you to discern which of those were alternative facts and which were the real thing, but I have digressed from my point that The Neurologist always helps me with The System and for that I am exceedingly grateful.

I'm also not going to complain about today's visit with The Neurologist because Sophie has been seizure free for more than three weeks. Yes. We have found the sweet spot, I guess, at least for now. I figure I can cover any jinxes by readily acknowledging that we might have a downturn at any moment. Downturns and rebounds are equal opportunity dictators.

I posted this picture of Sophie on Facebook this afternoon, and my feed literally exploded. Everyone is, of course, thrilled that Sophie is doing so well and many asked why? Here's why, I think, at least for now: Sophie was overmedicated on Onfi (the benzo that needs the pre-authorization) and the CBD. We know that CBD can jack up levels of Onfi, so when Dr. Bonni (Sophie's cannabis doctor who recently published a great book all about cannabis medicine that you can order on Amazon) suggested we decrease either the Onfi or the CBD to see if she responded, I naturally chose to decrease the Onfi. Faithful readers might remember that we jacked up the Onfi back in the fall when we spent six hideous days in the hospital ripping off the Vimpat, and I guess after a month or so her levels of Onfi were enough to put her in what I thought was an overall DECLINE. I was scared, ya'll and also resigned to -- well -- you know.

To make a long story short, I took away some Onfi and do you know that Sophie perked up? She more than perked up, actually. She is WOKE. She is rowdy. She is ready to fight with the rest of us against those who would stand in our way (we're talking about you Drumpf, and you Sessions and you Price and you DeVos and all of you who condone and support them and their retro policies that will hurt her and tens of thousands like her). She is not having seizures. She takes Onfi twice a day, CBD twice a day and THC once a day.

I'm here to blow your mind

Speaking of being WOKE, what did The Neurologist say? She was thrilled that Sophie is doing well and took care of my pre-authorization needs, but she also had a few choice words to say about the current clusterf**k that is our country. She was walking out the door, scribbling on a pad, but she said, I will NOT be here if the ACA is repealed and we go back to the Dark Ages before it when I had patients begging me not to write diagnoses in their charts. I think she kept muttering that all the way down the hall before she disappeared around the corner.



WOKE AF
#resist

#RESIST (DAY 4)

poster by Shepard Fairey

The EPA was just directed to freeze all grants. This means that graduate students and researchers funded on EPA funds are now without funds. All ongoing studies are stopped.

Scientists at the EPA and USDA are also blocked from communicating with the press or through the internet.

It all happened in a moment with a memo, by executive action, with zero input or oversight.

It could happen to any Federal institute, including the National Science Foundation, which funds research at universities around the country -- including the health insurance and living stipends of many, many students. 

Trump also froze all federal hiring yesterday.

Please, if you can safely raise your voice, raise it loudly. 

Call your congresspeople, call the White House, write op-eds and articles and blog posts. 

AND TWEET 

This is only Day 4.

(Share widely-- copy and paste is best to share with people outside our common friends. I did not write this. It was copied and pasted from a scientist who wants to remain anonymous. The fear of retaliation is real.)



#RESIST

"A Unicorn and An Echo"

Incantation

Human reason is beautiful and invincible.
No bars, no barbed wire, no pulping of books,
No sentence of banishment can prevail against it.
It establishes the universal ideas in language,
And guides our hand so we write Truth and Justice
With capital letters, lie and oppression with small.
It puts what should be above things as they are,
Is an enemy of despair and a friend of hope.
It does not know Jew from Greek or slave from master,
Giving us the estate of the world to manage.
It saves austere and transparent phrases
From the filthy discord of tortured words.
It says that everything is new under the sun,
Opens the congealed fist of the past.
Beautiful and very young are Philo-Sophia
And poetry, her ally in the service of the good.
As late as yesterday Nature celebrated their birth,
The news was brought to the mountains by a unicorn and an echo.
Their friendship will be glorious, their time has no limit.
Their enemies have delivered themselves to destruction.

Berkeley, 1968

Czelsaw Milosz











#thankyouPresidentObama
#resist

Staying Awake

What is the meaning of life? That was all -- a simple question: one that tended to close in on one with years. The great revelation had never come. The great revelation perhaps never did come. Instead there were little daily miracles, illuminations, matches struck unexpectedly in the dark; here was one. This, that, and the other.

Virginia Woolf, in To the Lighthouse

published May, 1927