we are better than this

I have much to say about the events of the past few days. About the process by which this monumental piece of legislation was jammed through the House. About how some of those who voted for it admitted they hadn’t even read it. About how none – not a single one – of those who voted for it have any idea what its impact might be without the non-partisan analysis of the CBO. About Congress exempting itself from the changes it is proposing. About the offensive, not to mention premature, celebrations that followed. About the callousness with which the lives of people like my child are being devalued and dismissed.

Yesterday, my Congressman, Joe Kennedy III said it far better than I could.

TrumpCare codifies a worldview that divides America by fate and fortune. A worldview that scapegoats the struggling and suffering and that sees illness as inadequacy. The ultimate test of our country’s character is not the power we give the strong, but the strength we give the weak.

We are better than this.

There is still time to turn it around in the Senate. The CBO score will come out in the next week or two. We will have the information that the House was so desperate to avoid us seeing before the vote. We will be able to have informed conversations. We will talk to our friends and neighbors. We will make our voices heard en masse.

We are better than this.


Statement from The Arc:

Members of the House of Representatives who supported the American Health Care Act voted against their constituents with intellectual and developmental disabilities. We won’t soon forget those who so willingly ignored the pleas of their constituents who rely on the Affordable Care Act and Medicaid for comprehensive health care coverage and long term services and supports that enable them to live full lives in the community. We must call this what it is – an attack on the rights and lives of people with disabilities.

“The federal government will be walking away from a more than 50 year partnership with states when it comes to Medicaid. Deep cuts and radical restructuring will decimate the Medicaid program. With an over $800 billion cut to Medicaid, states will face difficult choices about what people to cut from the program or what services to roll back. Optional services like home and community based services are likely to be cut. Lives will be lost when people are unable to access the health care and community supports they need.

“The plan that passed the House today is insufficient to keep people with disabilities insured or to support anyone with complex medical needs. If signed into law as currently written, this bill will result in people with disabilities and their family members losing health coverage in the private insurance market and in Medicaid. Coverage also becomes unaffordable as people with pre-existing conditions lose protections against higher premiums.   Those lucky enough to retain their coverage will find that some of the services they need – Essential Health Benefits – are no longer available.  And Medicaid funded long term supports and services, which help people live independently and be included in their communities, will be even scarcer as waiting lists for services will grow all across the country.  Some may end up living in nursing homes and institutions because community services are no longer available.

“The American Health Care Act shows callous and dangerous disregard for the wellbeing of people with disabilities and their families and erases decades of progress.  Now we turn to the Senate, our last line of defense. We intend to work with Senators on both sides of the aisle to oppose this harmful legislation. We continue to encourage disability advocates across the country to reach out to their Senators to voice their concern about this bill.”

Statement from ASAN, the Autistic Self Advocacy Network:

The Autistic Self Advocacy Network (ASAN) condemns today’s vote by the House of Representatives to pass the American Health Care Act (AHCA). The AHCA, if passed by the Senate, would slash Medicaid supports for Autistic adults and others with disabilities. It would also make health insurance unaffordable for millions of Americans with pre-existing health conditions, including autism.

No amount of backroom wheeling and dealing has changed the fact that, like earlier versions, this version of the AHCA would eliminate the federal government’s commitment to pay its fair share of the costs of the Medicaid program. This would lead to $880 billion less in federal funding for Medicaid programs over the next ten years. 10 million Americans with disabilities, including autistic children and adults, depend on Medicaid for basic health coverage. Medicaid also provides in-home supports to millions of Americans with disabilities who would otherwise be forced to move to an institution. These devastating cuts to Medicaid mean that states will be forced to slash Medicaid coverage, especially coverage for the long-term services and supports that allow us to remain in the community.

The AHCA would also allow health insurance companies to impose dramatic price hikes for people with pre-existing conditions, such as autism and other diagnoses associated with autism  like psychiatric disabilities and epilepsy. States could also chose to let insurers charge more for or stop covering essential health benefits, like emergency room coverage, preventative care, or speech and occupational therapy–services people with disabilities depend on to live good lives. Those who cannot afford these increased premiums will be forced into separate “high-risk pools,” even though high risk pools have never been able to provide adequate coverage at affordable rates for people with disabilities. This bill will devastate millions of Americans, including the disability community and including autistic people across the country. It must be stopped.

There is no way to “fix” these fundamental problems with the AHCA. As ASAN has long said, any replacement to the Affordable Care Act must increase access to health care–not take away coverage for 24 million people, strip away protections for people with pre-existing conditions, and destroy Medicaid. We therefore urge the Senate to reject the AHCA and work with advocates on a real plan to improve our health care system.

Statement from AARP:

We are steadfastly opposed to the American Health Care Act, which passed in the U.S. House of Representatives today.

This deeply flawed health bill will put an Age Tax on us as we age, harming millions of American families with health insurance, forcing many to lose coverage or pay thousands of dollars more for health care. In addition, the bill now puts at risk the 25 million older adults with pre-existing conditions, such as cancer and diabetes, who would likely find health care unaffordable or unavailable to them.

Statement from the AMA

“The bill passed by the House today will result in millions of Americans losing access to quality, affordable health insurance and those with pre-existing health conditions face the possibility of going back to the time when insurers could charge them premiums that made access to coverage out of the question.

The AMA urges the Senate and the Administration to work with physician, patient, hospital and other provider groups to craft bipartisan solutions so all American families can access affordable and meaningful coverage, while preserving the safety net for vulnerable populations.”


Vox – Who will be most hurt by the bill

NPR – What’s in the bill

CBS – What’s in the bill

The Hill – What we don’t know

Consumer Reports – Got a Pre-Existing Condition? Your Premium Could Rise Sharply Under New GOP Plan

A list of pre-existing conditions 

3 thoughts on “we are better than this

  1. Pingback: REBLOG: we are better than this | a diary of a mom | Ever So Gently

  2. Please don’t mark my comment as spam

    Please help me save my mom, Every dollar, every share counts.

    My mother is literally the only family I have ever had – my maternal family disowned my mother for marrying for love, my father abandoned us because he didn’t want a daughter and wanted me aborted – My mother took a stand against it and I have never seen my father or my maternal family. She is literally the only family I have and she is all I need.

    She, an uneducated woman in a 3rd world country where a woman’s ability is belittled to the kitchen. She fought to give me the education, the family care from just her and an independent life and right now, she is in desperate need of surgery

    I have no one to ask help to. I’m 19 and and I’ve spent all my college fees, my savings, sold everything I had for her medical expense but I am still short by a lot – I earn $120 a months, her dialysis alone costs $400 a month and without the surgery, it’s impossible to save her.

    Please help us, i beg you, help us https://igg.me/at/ZHIx7Mbh28o

  3. I came to your blog through a friend of mine explaining what scripting was to a neurotypical I’ve had a fun read. I hope Brooke and Katie are doing well. I am a 33 year old Autistic adult who also works as a PCA for another on the spectrum. (IMO, more of us who have the social skills and spoons probably should)

    I still script myself. Things in “Real” life remind me of things the characters in the Spyro the dragon series I’m working on would say.

    Tell Brooke I also use Max and Ruby as background noise whilst I paint. Well met, and I will subscribe.

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