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If the Affordable Care Act is repealed, this ability to care for Sophie will be severely compromised.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 115^th 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.