1/3 We appreciate @CDCDirector responding to our request to meet with disability leaders to acknowledge the harm her recent statement and the CDC’s policies have caused our community throughout the duration of the #COVID19 pandemic. #NoBodyIsDisposable
2/3 We look forward to ongoing meetings with CDC leadership to rebuild trust with the disability community and we anticipate immediate action to address the concerns raised in our meeting and in our letter from 100+ disability organizations. littlelobbyists.org/statements-and…
3/3 Little Lobbyists will continue the work to hold our leaders accountable and ensure our children with complex medical needs and disabilities are part of every decision that impacts them.

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More from @LittleLobbyists

26 Jul 20
We're 100 days from the #2020Election!

1/100 THREAD “This election is a matter of life & death for kids like Xiomara.” Xiomara’s mom, @ElenaHung202

Now to 11/3, we're sharing a story of a #LittleLobbyists each day - 100 reasons to be a #HealthCareVoter

bit.ly/38UvBwd
2/100 “Shreve was in the NICU for 9 months. Without the #ACA & #Medicaid, he would have reached the lifetime cap on care long before discharge." Shreve’s mom, Laura

This November, #vote against putting a cap on kids' lives.

#HealthCareVoter

bit.ly/3fx5zkZ
3/100 “#Medicaid allows our family to function. It allows us as parents to sleep at night knowing Willa’s safe with a nurse. It makes it possible for us to work. It gives Willa access to the tech she needs to communicate & thrive.” #ProtectOurCare bit.ly/2ZzAeJ3
Read 89 tweets
8 Jul 19
Friends, tomorrow a Federal appeals court will hear arguments on the Administration's lawsuit to throw out the entire #ACA -- including #PreExistingCondition protections.

A thread on what this means. 1/ usatoday.com/story/news/pol…
The fight to #SavetheACA is why Little Lobbyists exists. #ACA protections allow our kids to survive and thrive: #PreExistingConditions & essential care covered, no arbitrary annual/lifetime caps on care. 2/ littlelobbyists.org/our-stories
So when this Administration and the GOP in Congress began attacking the #ACA over two years ago, families organized together to fight back, to stand up for our kids and millions of others who would be devastated by these attacks. 3/ vox.com/policy-and-pol…
Read 7 tweets
24 Sep 18
Wanted to share a little about the lawsuit that AG Hawley filed that would eliminate protections for preexisting conditions for millions of Americans, including kids like ours. Feel free to follow along. 1/
Here's the first page of the lawsuit seeking to declare our health care protections unconstitutional. AG Hawley didn't have to join this lawsuit, but he chose to, on behalf of his state. 2/
Here's the part that says the #ACA protects #PreExistingConditions, makes sure people can't be charged more for them, and requires that insurers cover essential health benefits.

That's the part that keeps our kids alive and our families out of bankruptcy. 3/
Read 7 tweets
5 Sep 18
Friends, today's developments with regard to our health care made crystal clear #WhatsAtStake, the need to #StopKavanaugh, and the need to be a #HealthCareVoter this November.

Here's a quick explainer thread on what happened, and where we go from here. (1/)
In Texas today, a judge heard arguments on the lawsuit brought by several GOP State AGs and the Trump Administration to declare the #ACA, including #PreExistingConditions protections, unconstitutional. That judge seemed prepared to do just that. (2/)

modernhealthcare.com/article/201809…
If that one judge rules to strike down #PreExistingConditions protections, millions of Americans - including those of us with medically complex kids - would be at risk of losing health care.

Such a decision would be appealed, and could ultimately land at the Supreme Court. (3/)
Read 10 tweets
29 Jul 18
This November, millions of Americans’ access to health care is on the line. Each day from #100DaysOut to midterm elections, we’ll share the story of a Little Lobbyist who needs YOU to be a #HealthCareVoter for them. THREAD 0/100
#100DaysOut “Meet our kids and think of them when you vote. Our children deserve that.” @ElenaHung202 bsun.md/2LTlco6

This November, Xiomara's access to health care is #WhatsAtStake. She needs you to be a #HealthCareVoter. 1/100

bit.ly/2K3XYtQ
#100daysout Timmy would’ve lost his insurance in the NICU if he hadn’t been born just 6 days after the #ACA banned lifetime caps on care. bit.ly/2sAzoJV

Timmy's access to health care is #whatsatstake this November. Be a #HealthCareVoter. 2/100

bit.ly/2OrNcRt
Read 101 tweets

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