[Congressional Record Volume 165, Number 35 (Tuesday, February 26, 2019)]
[House]
[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.

                          ____________________