It is wonderful news to hear that the vote on the massive tax-cut for the wealthy bill (disguised as a health care bill) has been postponed for at least another week and a half. Yet as a mother and head of household of two young children with autism whose quality of care is heavily dependent on what happens to health care policy, I remain sober. Because we live in a world where it is sometimes hard to tell fact from fiction, here are some personal and objective truths as to why it is important to remain vigilant and engaged in what happens next with the American health care system:
The truth is that my role as “parent” does not end my resume as a caretaker; and H.R. 1628, the American Health Care (AHCA) Act of 2017 bill, is a cruel contract that takes for granted the real life impact on able-bodied caretakers tasked to providing for our loved ones. In truth no matter what the family structure, or even if one has private insurance, the impact of the AHCA will be detrimental to everyone.
The truth is that Medicaid helps schools help children with a variety of health care needs. And whatever happens to this bill, it will alter the culture of care that schools are able to provide for our children. And for children with disabilities, especially students who are medically fragile but are able to attend school, their safety is compromised by this law. And for many more children that receive speech and occupational therapy, typically noted in an IEP, Medicaid not IDEA funds typically cover the cost of care.
Katie Beckett (1978-2012) and her mother-advocate, to learn more about her heroic life, click here
The truth is that beyond Medicaid or Medicaid Expansion, state-sponsored waiver programs such as the Katie Beckett program, whose funding comes out of the District’s local budget, is compromised by the AHCA. If Congress is successful in its aims to gut Medicaid and turn it into a block grant program, as has been suggested by earlier this year, it would put a lot of pressure on local funds to meet the needs of a variety of families. And the means tests, the same means tests that I already suggest whose metrics are out-dated, thus problematic, and are the reason I support Universal Basic Income, will now be used to weed out families such as my own that don’t neatly fit into the definition of “low income”. I will be forced off any public assistance, leaving me out to dry on the marketplace of predatory lenders because there is absolutely no way I would be able to cover the cost of care needed for my children with disabilities.
The truth is that the AHCA dehumanizes experiences such as my own that involves complex layers of care. Beyond being a mother of two brilliant boys with autism, Atty and Jedi, I am also the daughter of a larger-than-life African father who I have watched etch away little by little due to the impact of dementia. I am a sister to two protective and wonderful brothers – one with mild scoliosis but is overall high-functioning and the other, our superhero big bro, who struggles with bipolar schizophrenia. Beyond these, our mother has had multiple back surgeries due to chronic back pain caused by inflammatory arthritis.
The truth is that sometimes I feel overwhelmed with the pressure of being the most able-bodied person in my family and I live in constant fear thinking of what would happen if something were to happen to me. What would happen with my children? My parents? My brothers and their families? And even as I have lived largely in resistance to the culturally imposed family title of the ada, which in the Igbo language translates as “first daughter”. I am, indeed, the ada of my family and I inherit all the traditional and modern implications of this role and title.
In Igbo culture, the two most important roles in the family are the okpara (first son) and the ada, and both roles in the family are filled with duty and authority, expressed in the traditional concept of ofo. In times of ceremony or in the untimely death or bad health of a parent, both the first son and daughter are to take on the responsibilities of maintaining the household both financially and in carrying on cultural traditions. And, then, in cases where there is only one able first son or daughter, then gender becomes a secondary notion and they are to adopt the role of keeping the household regardless of if they are male or female. The concept of these traditional roles of the okpara (also known as di-okpala in some dialects) and ada (referenced as aku in some dialects) are captured by the scholar Ifi Amadiume, who explains these complex Igbo cultural traditions in the classic book Male Daughters, Female Husbands: Gender and Sex in African Society (1987).
But I digress…the truth is that my culture and experience as a first generation American is considered a threat to those seeking to make America great, in the way that would only welcome me in shackles and not as a full citizen that requires all the benefits of citizenship for myself, my family and all Americans. The bitter truth is that even as my children are generations American from their fathers side and were born in this great city of Washington, DC, their access to full citizenship has also historically been stripped not just due to their blackness but because this has been the experience of individuals with disabilities of all races and cultural backgrounds.
As Senator Chuck Schumer said earlier today, the truth is that “the ultimate reason this bill failed is that the American people just didn’t like it.” Beyond political rhethoric and real life socially impactful concerns from caretakers like myself, the Congressional Budget Office (CBO) estimates that the AHCA would reduce federal deficits by $119 billion over the coming decade and increase the number of people who are uninsured by 23 million in 2026 relative to current law. In the 49-page report released by the CBO yesterday, June 26, 2017, can be credited for slowing down the passage of this troubling law but it won’t likely stop some of the key signatures of the goals of the bill: to gut Medicaid.
The truth is that many Republicans, such as the House Majority Leader Paul Ryan (R-WI), have been dreaming of cutting Medicaid since college and that they have majority representation in the House of Representatives, Senate and the White House. And while I pride myself in seeing the best in people, I cannot find the brighter side of these neoliberal policies that have no precedence anywhere else in the world and no major economy in Europe or with our neighbors in Canada reflect such a cruel approach to healthcare, which is truly a human right.
The truth is that beyond the CBO report, a large reason why public outcry has come out against the AHCA is because of disabilities self-advocates from the historic and proven might of ADAPT. About 60 members of ADAPT were arrested on Thursday June 22, 2017 in front of Sentor Mitch McConnell’s office. The graphic images of police officers carrying out protesting Americans in their wheelchairs and other medical devices sent a compelling visual around not only who is impacted by the AHCA but that they are willing to risk it all to stand up for their democratic rights. We as parents locally based in Washington, DC form greater alliances with ADAPT and our local powerhouse self-advocates organization, Project ACTION, because there is so much that comes out of solidarity and working together for a common cause.
Finally, we are going in the wrong direction when it comes to healthcare reform. Truthfully, I was not a big fan of the Affordable Care Act (ACA) because it did not go far enough. But I was grateful for some victories of the ACA because of key benefits including critical therapies such as Applied Behavior Therapy previously not accepted by insurance companies, as well as forcing these same insurance companies to indiscriminately cover pre-existing conditions and long-term care. It was my hope at the time that we would steadily move closer to proven effective single-payer systems adopted in Canada and several other countries around the world. And, so it is crucial that we as parent advocates of children with disabilities learn more about efforts happening in real time to promote the “Medicare for All” bill introduced by John Conyers, (D-MI) that has already passed three times before 2017 and received support by over 100 Democrats in the US but failed each time in this 115th Republican led Congress.
Let’s all keep watching and speaking truth to power, together.