[Congressional Record Volume 172, Number 37 (Wednesday, February 25, 2026)]
[Senate]
[Pages S666-S667]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]



                                  Iowa

  Mr. GRASSLEY. Mr. President, last week, I started my 46th executive 
year of holding meetings in each of Iowa's 99 counties. During the 
Q&A's in 13 southwest Iowa counties, we discussed the need to lower 
prescription drug costs by reining in pharmacy benefit managers, PBMs 
for short. We also spoke about the Working Families Tax Cut Act, which 
puts more money back into Iowans' pockets. For the average Iowa 
household, that is $2,063 of your hard-earned money back to you. I look 
forward to hearing directly from more Iowans throughout the year as I 
continue with all the meetings in each of our 99 counties.
  On February the 3rd, President Trump signed into law the fiscal year 
2026 funding package that included a very important priority of mine, 
legislation called Accelerating Kids' Access to Care Act. This law is 
meant to simplify the process so that kids with complex medical needs 
can get the specialized healthcare that they need in a timely manner.
  I would like to spend a few minutes explaining the importance of this 
new law and how we got to this point. Kids with complex medical needs 
often face redtape, face delays, and face frustrations when getting 
their specialized medical care.
  The Federal Government defines kids with complex medical needs as 
having a life-limiting illness, a rare pediatric disease, or one or 
more chronic conditions that impact multiple organ systems and reduce 
cognitive or physical abilities.
  This can be kids with cancer, cystic fibrosis, or congenital heart 
disease. These kids, on average, see 5 to 6 specialists and up to as 
many as 20 or 30 allied health professionals. You can see, managing 
these types of medical needs takes patience and help because parents 
are often overwhelmed at the scope of that care and overwhelmed how to 
navigate the system to get that care for their special needs kids.
  The specialized medical care for kids with complex medical needs 
tends to come from only a few providers, and here is the rub: often out 
of State at a pediatric hospital.
  This requires coordination with instate and out-of-State providers 
and State Medicaid officials to allow this care to happen. The process 
to get care is difficult and full of redtape, delaying care that these 
kids desperately need and, in some cases, not receiving care at all.
  To solve this problem, in 2018, I introduced the Accelerating Kids' 
Access to Care bill. Our aim was simplification of this redtape 
process. This law will give States the ability to use a streamlined 
screening and enrolling process for out-of-State specialized pediatric 
care providers that need to enroll in the State's Medicaid Program. We 
do this while also retaining safeguards to protect program integrity.
  When I first started on this law in 2018 during the 115th Congress, 
we had eight bipartisan sponsors. In this, the 119th Congress, it 
garnered 46 bipartisan sponsors and became one of the most cosponsored 
Medicaid bills before the Finance Committee.
  Over the past few years, we built support from well over 200 
organizations dedicated to pediatric care. I also worked with my 
colleagues, including those on the Finance Committee, and I want to 
give a special shout-out to Chairman Crapo of the Finance Committee for 
his partnership in getting this law passed.
  The passage of the Accelerating Kids' Access to Care Act is a win for 
kids with complex medical needs and also very helpful to the families 
that care about their children.
  It is a win for kids like Charlie, a brain tumor survivor who also 
spoke before the Finance Committee in 2023 about the importance of this 
legislation.
  It is a win for kids like 3-year-old Edwens from Perry, IA, whose 
family travels out of State so he can receive pediatric gene therapy at 
the M Health Fairview Hospital in Minnesota. Only a few medical centers 
provide this kind of care in the country for Edwens' rare disease. 
There are many other kids whose lives will improve because of this law.
  Another person I can think of when I talk about this law is the late 
Katie Beckett. Katie was from Cedar Rapids, IA. She was born in 1978, 
and at 5 months, she contracted a brain infection that required a 
ventilator to breathe.
  After many years in the hospital, Katie was unable to leave because 
Medicaid rules didn't allow her to receive care outside of the 
hospital, even though it was possible for her to get care at home being 
with family and, of course, having this treatment at home be very cost 
effective to the taxpayer. In the early 1980s, President Reagan heard 
about Katie Beckett's story, and he removed redtape for Katie through a 
Medicaid waiver.
  I had a colleague from Iowa in the House of Representatives at that 
time, Congressman Tom Tauke of Iowa, who was the main mover to get the 
President to grant this waiver, and I will never forget Tom Tauke's 
hard work in this area.
  Since then, Katie Beckett waivers have resulted in more than a half a 
million disabled kids being able to receive care at homes with their 
families rather than being forced into hospitals and institutions.
  This law also established the Family-to-Family Health Information 
Centers. Today, these centers in each State are helping families and 
their kids navigate the complex system of services and support. This is 
the kind of empowerment Washington ought to promote--public policy that 
illuminates opportunities instead of keeping people in the dark.
  In my time in the Senate, we have seen medical advancements for kids 
with complex medical needs, and Congress has responded by giving these 
kids and their families the proper medical resources. One of these 
resources was the Family Opportunity law that

[[Page S667]]

President Bush signed 20 years ago this very month. That law did 
several things. This, by the way, was a cooperation between this 
Senator from Iowa and then-Senator Kennedy of Massachusetts.
  First, the legislation, the Family Opportunity Act, enabled middle-
income families who have kids with disabilities to buy into Medicaid. 
It has helped families get the healthcare they need for their kids with 
disabilities without going into poverty. It was a pro-work, pro-family, 
and pro-taxpayer piece of legislation.
  More recently in 2019, Congress passed my Advancing Care for 
Exceptional Kids law, or a law that goes by the short term of ACE Kids. 
ACE Kids better aligns Medicaid rules and payment to incentivize 
coordination of care. It does this by establishing a pediatric health 
home for kids with complex medical conditions.
  Kids with complex medical conditions often see multiple doctors and 
dozens of healthcare professionals. You can see, that is a lot of care 
coordination that often doesn't happen, or it is left to the parents to 
figure out. ACE Kids fixes this and ensures care coordination 
happening.
  While I am sure more work will need to be done, I want to recognize 
the hard work that went into the passage of the Accelerating Kids' 
Access to Care law and the importance of it--its bipartisanship, its 
backing by a couple hundred organizations that advocate for kids with 
special needs. Yet it is another step towards supporting the dignity of 
exceptional kids.
  I yield the floor.
  The PRESIDING OFFICER (Mr. Sheehy). The Senator from Indiana.
  (The remarks of Mr. Banks pertaining to the introduction of S. 3917 
are printed in today's Record under ``Statements on Introduced Bills 
and Joint Resolutions.'')
  Mr. BANKS. I yield the floor.

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