House Passage of the AHCA: Did Members of the Down Syndrome Task Force Fail Us?

After Thursday’s vote in the House I wondered how many of our so-called friends, those who claim to be advocates in our corner, voted in favor of the AHCA.

A site that I’ve been watching since all of this began, “Save My Care,” quickly published a list of names of those who voted in favor of the bill. When I compared that with the list posted by The National Down Syndrome Society of members of the 115th Congress who have claimed to be our allies, I was shocked.

Since 2008 members of Congress have signed on to be allies of the Down syndrome community. What started as a caucus in The House has now become a bicameral“Task Force.”

A partial list of the goals (From the Congressional Down Syndrome Caucus Facebook page):

The Congressional Down Syndrome Caucus will:

  • Urge relevant authorizing committees to support Down syndrome programs and patient care through letters and testimony.
  • Ensure Down syndrome is adequately addressed in all relevant legislation and regulations.
  • Work with National and Local Down syndrome groups to develop leading edge educational, medical and work related initiatives that support individuals with Down syndrome.
  • Identify and strike down barriers in the law for person’s with mental disabilities.

All but the first bullet are the same as what is posted on the NDSS site that explains the expanded “Task Force.”

So how is it that 17 out of 42 members of this group who claim to be advocates for people with Down syndrome, voted to decimate Medicaid benefits?

Even worse, two of the four co-chairs in the House, both of whom have children with Down syndrome, voted in favor of this bill.

Image credit: Capitol File Magazine “Proud father and son: Alex and Congressman Pete Sessions”
Image credit: Capitol File Magazine “Proud father and son: Alex and Congressman Pete Sessions”
Facebook image: Cathy McMorris Rodgers
Facebook image: Cathy McMorris Rodgers



So what convinced these 17 lawmakers to vote this way?








Cathy McMorris Rodgers wrote this in an opinion piece in the Washington Post called, ”My son has a preexisting condition. He’s one of the reasons I voted for the AHCA.”

“It’s the people we love — our children, friends and neighbors — who are the inspiration behind our American Health Care Act, which we passed in the House on Thursday.”


How is it that we can have such completely different understandings of how this bill works?

According to the National Disability Navigator the AHCA can indeed spell disaster for people who have pre-existing conditions- it just does it a round-about way; either by pricing insurance in a way that makes it impossible to get, or denying specific services that people with disabilities require.

“In theory, the AHCA maintains the ACA protection that insurance companies cannot deny coverage due to a pre-existing condition. However, other changes could affect this protection (see #3 & 4 below).”

3: …“So in states that seek the waiver, people with disabilities could have their premiums set at a much higher amount, effectively pricing them out of the market. States requesting these waivers would have to address high risk individuals through one of a few options, including high-risk pools or reinsurance programs.”

4. …“The AHCA already eliminated the essential health benefits (EHBs) for the Medicaid program. However, with the MacArthur amendment, the AHCA would allow states to seek a waiver from the ACA requirement that insurance companies be required to offer plans that cover ten EHBs. Without the EHBs, insurance companies will be allowed to determine what is covered and effectively deny coverage for pre-existing conditions by not providing coverage for the services that those pre-existing conditions require.”

All you have to do is search Google for “disabilities” and “AHCA” to see the terrifying headlines of what this bill can bring.

AHCA & Disabilities

So where did the failure take place?  On the ground, the grassroots advocacy from the constituents whose elected officials were about to vote on this issue? From my perspective on social media it seemed as though people with disabilities, their friends and families, were quite vocal and well organized.

What about the national groups whose mission it is to be advocates for people with disabilities? Were they not able to pressure convince the representatives who have aligned themselves with our community that this bill threatens to take away the very lifeline of people who need it the most? Did they drop the ball on this, or are they really just not in a position to affect change in the current political climate?

Perhaps it’s time to re-evaluate the criteria for belonging to this “Task Force.” Maybe we should be keeping a better eye on how the members vote – and when they do so against the best interests of our community, we enact some kind of consequence. At the very least shouldn’t we say something about it?

Certainly this is a complicated situation with no easy answers. However, I would venture to say that no other issue is more important to people with disabilities than health care. Just ask a family who has been waiting on a list for years, sometimes decades, what cuts to the Medicaid budget mean to them. Or talk to a person who depends on personal care assistants or other health care benefit to live independently. In general, talk to anyone who has or loves someone with, a disability (that’s just about everyone) and can’t afford to pay medical expenses out of pocket.

I understand that we need to foster relationships with members of Congress in order to have any chance of getting their support in the future; but how do we evaluate those relationships?

When should we say –  “Sorry, you don’t speak for us.” ?        Tweet this  

Here’s the list of the members of the House who are members of the Ds Task Force and voted yes on the AHCA by state. The two in red are co-chairs of the task force.  There are only five senators on the task force so far but we may want to broach the subject with them before they vote.


Trent Franks (R-AZ)
David Valadao (R-CA)
Kevin McCarthy (R-CA)
Kevin Yoder (R-KS)
Lynn Jenkins (R-KS)
Blaine Luetkemeyer (R-MO)
Thomas MacArthur (R-NJ)
Steve Chabot (R-OH)
Greg Walden (R-OR)
Glenn “GT” Thompson (R-PA)
Diane Black (R-TN)
Brian Babin (R-TX)
Kenny Marchant (R-TX)
Randy Weber (R-TX)
Representative Pete Sessions (R-TX)
Bob Goodlatte (R-VA)
Representative Cathy McMorris Rodgers (R-WA) 

Senators who are members of the Ds Task Force:

Tom Cotton (R-AR)
Christopher Coons (D-DE)
Pat Roberts (R-KS)
Amy Klobuchar (D-MN)
Roy Blunt (R-MO)


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