Saturday, January 14, 2017

Saturday Resistance -- Hear Me Out If You Care About Sophie and People Like Her

I take care of Sophie at home with the help of her father and a part-time babysitter because of a Medicaid waiver that she qualifies for given her cognitive and physical disabilities.She has been "deemed" a person "qualifying" of "institutional care." I am basically paid to take care of her at home, saving the government -- taxpayers -- a considerable amount of money to care for her in an institution. Those are the bald facts. We are, in a capitalist society, reduced always to a number. It saves you money to honor this social contract.

If the Affordable Care Act is repealed, this ability to care for Sophie will be severely compromised. Please read the following email that I've cut and pasted in full to learn more about what's going on for America's disabled and chronically ill.

If you can, lend your voices to the resistance.

I know many of you reading this blog are conservative voters who live in states that are gung-ho bent on destroying the Affordable Care Act. Perhaps you don't realize that despite its imperfections, it has also lent stability to millions of families like mine. Yes, we do struggle with rising premiums. We do struggle with the systematic denial of medical claims. We struggle with the ungodly amounts of money charged for pharmaceutical drugs. I am paid minimum wage to care for her at home, an amount far inferior to that which I might earn in a full-time career. I also struggle to care for Sophie without going insane, to tell you the truth, because it's just brutally hard to do what we do every single day for decades. Sophie's recent 5-day hospitalization cost more than $150,000. That would have bankrupted us if not for the Affordable Care Act and her Medicaid waiver, and I live in a grotesquely over-priced tiny bungalow in an economically rich neighborhood in Los Angeles. I have family that helps me to pay for relief, too. Unlike most people in similar circumstances, I have enough money to get therapy to help me to deal with the caregiving, with the constant stress of seizures, with the possibility of Sophie dying before me or dying afterward.

I'm telling you this to emphasize just how life-altering it was when the Affordable Care Act passed, even with all of its absurd complexity and kow-towing to the big insurance companies. The pre-existing conditions component, the lifetime maximum component, the preventive care component, the birth control component -- shall I go on? Our family was careening toward serious financial difficulties and running the risk of going uninsured before the Affordable Care Act was passed. Sure, we might have been "saved" by family, we might have taken the risk to have no insurance at all. I don't know. What I do know -- again -- is that I have plenty of resources, both financial and emotional and that many, if not most, of my fellow caregivers, their children and families, do not. So I'm advocating for them, really, far more than myself.

Even if none of this comes to pass, if the draconian machinations of Eddie Munster, Drumpf et al come to nothing, if the "replacement" even happens, the psychological distress that many of us are feeling right now is really difficult to convey without sounding whiny, maybe, or privileged. Then I remember what the hell we've all been doing, how much we fought for the ACA to begin with and how we have to do it all over again, even as we continue to advocate for and keep our children ALIVE.

If you can, lend your voices to the resistance.

Read this:
ICYMI: ANCOR Urges Congress to
Protect HCBS as Changes Begin
Alexandria, VA – Yesterday, the 115th Congress approved a budget resolution that sets the stage for the repeal and replacement of the Affordable Care Act (ACA), and allows for changes to the Medicaid program. In response to this action, ANCOR responded with a statement urging Congress to protect the HCBS Medicaid program, and to consider the widespread effects any alterations to the ACA and Medicaid would bring about for people with intellectual and developmental disabilities, and their loved ones.
ANCOR has also alerted its members – community service providers to people with intellectual and developmental disabilities – about the vote, and encouraged them to relay these consequences to their representatives and senators. 
ANCOR CEO Barbara Merrill responded to yesterday’s vote with the following statement:
"Now is the time we must weigh in and let Congress know that individual lives depend on the Medicaid home and community-based services system, and that no changes should even be considered until stakeholders like ANCOR see what the proposed changes are."
See below for ANCOR’s statement in its entirety.
Today, the 115th Congress concluded their approval of a budget resolution that sets up the mechanism for Congress to repeal and replace the Affordable Care Act and also, through a process called reconciliation, make changes to the Medicaid program.
These changes include moving forward with proposals to transform Medicaid to a block grant or per capita cap program. Republicans, who hold the majority in both Houses of Congress, have indicated their intention to move forward quickly with this plan.
‘Now is the time we must weigh in and let Congress know that individual lives depend on the Medicaid home and community-based services system," said Barbara Merrill, ANCOR CEO, ‘and that no changes should even be considered until stakeholders like ANCOR see what the proposed changes are.’
ANCOR sent an alert this afternoon to its members – community service providers to people with intellectual and developmental disabilities – and urged them to contact their senators and representatives to ensure they understood that decisions to alter the Affordable Care Act or Medicaid as a whole have direct, and at times immediate, consequences for people with intellectual and developmental disabilities and their families who rely on home and community-based services.
‘The Affordable Care Act includes the creation of innovative and effective programs, like the Community First Choice Act, which have strengthened the Medicaid program and improved the ability of states to provide quality residential and day services for individuals with I/DD,’ explained Esmé Grant Grewal, Senior Director of Government Relations for ANCOR. 
‘The Medicaid HCBS program, while not perfect, is essential to making sure that hundreds of thousands of individuals with disabilities can live in the community. Historically, when states needed help in shifting children and adults with these disabilities out of large and isolating institutions, the HCBS program was created as a federal and state program to support that need.’
ANCOR urges Congress to engage stakeholders when considering changes to the Affordable Care Act and Medicaid, and offers itself as a resource to any Congressional office.”

ANCOR is the American Network of Community Organizations and Resources. 


  1. I'm going to share this on FB, of course, and call my congresspeople on Monday. This is simply untenable.

  2. Untenable and nightmarish. Obviously none of these lawmakers have to contend with this sort of thing or they would never considering repealing . Aren't they just the privileged ones ?

    1. Yes they are. And many represent primarily privileged who don't want to pay for ACA

  3. Sadly that is where we are going. The conservative talk among most Republicans is "don't replace ". They are scared to death Trump is going to put in a pricey replacement. We are in the position wher we are hoping Trump refused to sign the repeal without a replacement. He's not a true conservative and there is the chance that he does not want to be on hook for pulling insurance out from under so many. The GOP has made their feelings very clear about their willingness to do so in their refusal to add that certain measures would remain, to give some comfort to those keeping track of what's happening. They did not. They represent people who do not want it replaced. Only way that's changing is if their constituents, not a bunch of democrats start on them. The beauty of this is that they can put it all in Trump if he signs before a replacement, something he might not do. That's the only place I see wher this juggernaut of repeal is going to meet some replace. ACA is going to be gone. It's a done deal the way this runaway train is going, right to Trumps feet. The votes and refusal to address any parts of the Act as well as conservative sentiment makes this a goner. It's all about the replace. I'm trying to get some message to Trump to be the saving grace in putting the Best health plan out there to replace ACA

  4. I will do whatever I can. My heart breaks for you and others in your position. I don't know what I'll do myself. I'm frightened by the unknown.

  5. As if the everyday challenges for caregivers such as yourself aren't already more than enough to cope with, Eliabeth! So sorry our country's politicians have taken this turn for the worse. Doing what we can by calling and protesting and sending hugs from here. x0x0 N2

  6. I'm already part of the resistance given I've been raising two Special Needs Grandchildren with significant health and mental health disabilities since birth and have a 100% Disabled Veterans Husband. Over the years I've seen earned benefits, especially health benefits, being systematically taken away from our wounded Warriors. The VA here in Phoenix has been under intense Investigation, allegedly, for over three years now, nothing has changed for the better, Veterans are still dying waiting for Care they should be receiving immediately for life threatening illnesses and medical emergencies... disgraceful! That's what The Man Served 39 years to receive and under contractual agreement earned as a benefit... previously free of charge for Life and now we pay and the premiums keep rising and TriCare finds all kinds of ways not to pay so many Civilian Docs and Pharmacies no longer accept our Insurance! As for the Grands, hopefully the State of Arizona {and every other State} will not be so foolish as to Believe that denying chronically ill Children medical treatment and emergency services will save anyone money?! It's a pay now or pay later scenario as you well know. When I recently had the op to Adopt my Grandchildren after 15 years of being their Caregiver as a Kinship Placement {they were Wards of the State} I insisted that one of the contingencies included Health Benefits since The Man was not allowed to Adopt due to severe extent of his disabilities and needing a Full Time Caregiver {ie: me} himself. He's the only one with Insurance, I have been an unpaid Caregiver for decades now. I was pleasantly Surprised when the Judge awarded me an Adoption Subsidy due to the rating being so high on both Children's Disabilities... first time ever I received any compensation for having given up a prosperous Career to do the right thing by my Loved Ones! Color me Happy... but Guarded, since I realize that subsidy at any point in time could be rescinded, so I try hard not to rely upon it nor get too used to it. Thankfully The Man's long Service to Country did earn him a Pension and Disability Pension which can provide for our Family as well, I grieve for those unfortunate Families with Chronic Illness and profound Disabilities who do not... I'm Passionate about Humane Care being given to every Human Being... for that matter to every domestic animal as well... our Humanity is what separates us from just being Beasts ourselves. Huge Hugs to you and Sophie this day... stay the course and continue to Fight the Good Fight in Faith... Dawn... The Bohemian

    1. Note: What I meant above is The Man's Insurance will only cover he and I... since he wasn't allowed to Adopt the Grands are not considered his Dependents and his Ins. will not cover them. They have profoundly expensive medical and mental health needs that are pre-existing... so most Ins. if given the choice would refuse coverage.

  7. Not sure what I can do, but I certainly will do the things you suggested.

  8. I'm reading, I'm thinking of you and Sophie and your family, worrying for you and with you. This election, this Congress is a nightmare we can't wake up from. I don't understand what exactly is happening beyond plain ignorance, greed and lack of compassion. Stupid, disappointing America. So many people I love will be harmed by the repeal, and there is so much stress inherent in knowing they don't have a viable or decent alternative, and knowing they just don't care about those left behind.

    I keep hoping for a miracle, or a debacle, or a do over. It's silly, wishful thinking. I intend to treat this new administration with the respect they give the outgoing one.

    Your heart is so big, it's a wonder it hasn't burst. And I keep coming back to look at the photo of that beautiful loving space you create for Sophie. xo



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