[Page H2221]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
HONORING THE LIFE OF CARRIE ANN LUCAS
(Mr. NEGUSE asked and was given permission to address the House for 1
minute.)
Mr. NEGUSE. Madam Speaker, I rise today because, on February 24,
Colorado and our Nation lost a fierce and fearless advocate, Carrie Ann
Lucas of Windsor, Colorado.
A mother, an activist, and an attorney, Carrie practiced family law
to prevent discrimination against parents with disabilities. She
adopted four children, and her accomplishments centered on her
dedication to them. All her children have significant disabilities, and
Carrie always ensured that they were loved, respected, and supported in
their individual hopes and dreams.
Carrie devoted so much to ensuring her wisdom never stayed with just
her but was shared throughout the disability rights community, the
legal world, and our Nation. She spoke out strongly and protested each
day for the rights of people with disabilities to comprehensive
healthcare with dignity and respect.
It is a permanent scar on our Nation that Carrie was lost to the
refusal of an insurance company to cover one particular medication,
which led to escalating health issues and, eventually, her premature
death.
Carrie's activism knew only the bounds of freedom and of justice. She
was ceaselessly bold, brave, and selfless.
My thoughts are with her family, and I pray that this body will gain
some of the bravery that never faltered in her and use it as an
inspiration to ensure that no American goes without healthcare--ever.
Madam Speaker, I include in the Record the obituary of Carrie Ann
Lucas.
Obituary for Carrie A. Lucas
The disability community lost one of its fiercest advocates
on 2/24/19. Carrie Ann Lucas, a disability rights attorney
who pioneered representation for parents with disabilities,
died after an arbitrary denial from an insurance company
caused a plethora of health problems, exacerbating her
disabilities and eventually leading to her premature death.
She was 47 years old.
Carrie Ann Lucas is known around the state and the country
for her strong advocacy.
Carrie Ann grew up in Windsor, Colorado, and had several
careers including being a teacher, ordained minister and
legal assistant before becoming an attorney. Carrie graduated
from Whitworth College in 1994, traveled and taught in
Saipan, and then returned to the states to attend the Iliff
School of Theology. She received a Master's of Divinity with
Justice and Peace Concentration from Iliff in 1999, but
during her time there, became increasingly involved in
disability advocacy. After she graduated, she started working
as an advocate and later legal assistant for the Colorado
Cross-Disability Coalition, investigating, preparing, and
monitoring disability rights cases and providing informal
advocacy on a wide range of topics. While there, she was
granted a full scholarship as a Chancellor's Scholar at the
University of Denver School of Law.
Following her graduation from law school in 2005, she was
awarded a prestigious Equal Justice Works fellowship to
create a program to combat discrimination that impacts
parenting for parents with disabilities. This program,
initially started within the Colorado Cross-Disability
Coalition, spun off to be Disabled Parents Rights, one of the
only organizations in the country devoted to this issue. She
also became a national expert and trainer on the rights of
parents with disabilities and, through her legal advocacy,
secured decisions upholding and promoting those rights here
in Colorado. Most recently she was recruited by the Colorado
Office of Respondent Parents Counsel to help set up a program
to train other lawyers around the state to replicate the sort
of impact she was making.
In addition to these professional activities, Ms. Lucas was
an advocate with the disability rights groups ADAPT and Not
Dead Yet, speaking, teaching, writing, testifying, and
protesting on disability justice and the rights of people
with disabilities to healthcare and respect. She was also a
talented photographer and cook. Carrie Ann was an activist at
heart. She graduated from EMERGE, ran for Windsor City
Council in 2017, and was planning on additional political
activity. She was chair of Colorado Democrats with
Disabilities for the past several years. She was a member of
the ADAPT group that protested in Cory Gardner's office and
got arrested to help save the Affordable Care Act in 2017,
particularly Medicaid. She served on the Board of Directors
of the American Civil Liberties Union of Colorado. She was
active with Not Dead Yet and fought hard against physician
assisted suicide and the notion that life with a disability
is not worth living. She demonstrated every day how amazing
life with a disability can be. She was given the
Intersectionality Award from The Civil Rights Education and
Enforcement Center in 2016. She was a leader in passing HB
18-1104 which changed Colorado law to make sure that
disability was no longer a reason to remove a child from a
parental home. There is much, much more.
Carrie became a lawyer to practice family law after lived
experience of discrimination against parents with
disabilities firsthand. In 1998 fostered and later adopted
her oldest daughter, Heather Lucas. Heather has significant
developmental disabilities and was languishing in another
state. She fostered and was preparing to adopt a second
child, but that was disrupted due to prejudice against
parents with disabilities. Where most people might be upset
and feel helpless, Carrie Ann was furious and went to law
school to represent parents with disabilities.
Carrie adopted three more children over the years, Adrianne
Lucas, Azisa Lucas and Anthony Lucas. All of her
accomplishments centered on her dedication to her children
and her role as a mother. All of her children have
significant disabilities and Carrie Ann always made sure that
they were not only educated and included in their
communities, but that they were loved, respected, and
supported in their individual hopes and dreams.
Carrie had a severe neuromuscular disease, a rare form of
muscular dystrophy. She relied on a power wheelchair, and had
used a ventilator for years. However, her death was premature
and caused by inappropriate and brutal cost containment
procedures of an insurance company. Because Carrie Ann worked
for the state, she had use state insurance which was primary
ahead of her Medicare and Medicaid. In January of 2018 she
got a cold which turned into a trach and lung infection. Her
insurance company UnitedHealthcare, refused to pay for the
one specific inhaled antibiotic that she really needed. She
had to take a less effective drug and had a bad reaction to
that drug. This created a cascade of problems, loss of
function (including her speech). United Healthcare's attempt
to save $2,000 cost over $1 million in health care costs over
the past year. This includes numerous hospitalizations,
always involving the Intensive Care Unit which is par for the
course for ventilator users.
Carrie Ann had hoped to spend a lot of time in 2019 using
her tragedy to work to fix our broken health care system. Her
blog www.disabilitypride.com provides more details. For all
intents and purposes a shero of our community was murdered in
the name of cost containment. This is why we MUST fight these
measures with all we have. Insurance companies and government
programs must not be allowed to deny people what they need.
Just last month she was having to ration her insulin for her
type 1 diabetes because of the same insurance company and how
impossible it is to work between private insurance and
Medicare and Medicaid. This is a great example of why people
with disabilities should not be forced into insurance or
health plans and why we need Medicaid as the primary health
delivery system for this country.
In addition to her four children, Carrie Arm is survived by
her parents Phil and Lee Lucas, sister Courtney Lucas,
brother Eric Gover, her niece Danielle Mann, nephews Cody
Mann, Gavin and Colin Lucas, Danielle's partner Aaron Boone
and their sons Izaiah, Kyal and Eli, Gavin's wife Kathleen
and their daughter Emily and Colin's son Dakota. She is
predeceased by a sister, Kelli Mann and her grandparents. She
is also survived by her partner Dr. Kimberley Jackson, a CCDC
Board member and activist in the disability community. She
will be missed by a wide circle of friends and colleagues
throughout the country.
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