On Sunday, the disability community lost one of its most dedicated advocates. Carrie Ann Lucas, 47, was a beloved mother and nationally recognized attorney who lived in Windsor, Colorado. She was also a professional colleague, mentor, and a dear friend.
“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,” read a February 24 post on her Facebook page.
Lucas, who had a rare form of muscular dystrophy, used a power wheelchair and a ventilator. She also had low vision, was hard of hearing, and had type 1 diabetes. As she documented on her personal blog in January 2018, Lucas became ill with a bad cold. According to her Facebook page, her health insurer, UnitedHealthcare, refused to pay for a specific medication she needed, owing to its cost of $2,000. Consequently, she had to take a different and less-effective medication, which caused deleterious reactions. Lucas’ health rapidly declined, resulting in numerous hospital stays over the last year and the loss of her ability to speak. The obituary on her Facebook noted, “United Healthcare’s attempt to save $2,000 cost over $1 million in health care costs over the past year.” More importantly, Lucas’ friends and family argue, it cost her her life.
Access to health care was always a top priority for Lucas. Indeed, as a member of ADAPT, a grassroots group of disability rights activists, Lucas gained national attention in June 2017 after staging a multiday protest inside the office of Sen. Cory Gardner (R-CO). The group was fighting Republican attempts to repeal the Affordable Care Act (ACA). Doing so would have resulted in decreased Medicaid funding and would have jeopardized services and supports that allow people with disabilities to live in their communities. “This issue is just too critically important for my own independence and that of my children so I felt like it was time to do more,” Lucas told Rewire.News at the time.
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Eventually, the protesters were arrested, which Lucas live-streamed on Facebook. She was the last protester to be arrested and was cited with trespassing and interference with a police officer because she refused to tell the arresting officers how to use her power wheelchair.
Lucas dedicated nearly two decades to fighting for the rights of other disabled parents. This began after a social worker told her that because of her disability, she could not adopt her niece Heather, who was in foster care. Ultimately, she convinced the judge that she was capable of doing so. She went on to adopt three more children with disabilities: Asiza, Adrianne, and Anthony.
Lucas took the anger she felt about the bias she encountered and decided to attend law school. After graduating, Lucas was awarded a prestigious Equal Justice Works fellowship to create a program to protect the rights of parents with disabilities. This program initially started within the Colorado Cross-Disability Coalition; Lucas later founded Disabled Parents Rights, one of the only organizations in the country devoted to fighting for the rights of parents with disabilities. Most recently, she worked at the Colorado Office of Respondent Parents’ Counsel, where she trained other Colorado attorneys on how to represent disabled parents.
Lucas was also instrumental in getting the Colorado legislature to pass the Family Preservation for Parents with Disability Act, which aims to ensure that parents with disabilities are not discriminated against by the child welfare system. Speaking to Rewire.News about this bill in May 2018, Lucas explained, “In my parent defense practice, between 75 and 80 percent of my clients in child protection cases had a disability. Oftentimes disabled parents are not receiving the accommodations they are entitled to. Too often decisions are made to prevent a child from going home, without providing parents a fair opportunity to parent,” There are now efforts under way to rename this bill the “Carrie Ann Lucas Act.”
Lucas was also active in her community and ran for Windsor Town Board in 2017. Although she lost the election, she remained politically active.
Lucas’ service will be held in Windsor on March 1. A moment of silence was held in her honor Monday morning in Colorado on both the House and Senate floors. On Monday night, Colorado Lieutenant Governor Dianne Primavera signed a proclamation declaring February 25 to be Carrie Ann Lucas Day. Denver Mayor Michael B. Hancock also offered his condolences on Twitter: “Sending my condolences to the friends and loved ones of Carrie Ann Lucas. She was an unapologetic advocate for human rights and spent her life fighting for the voiceless. She will be missed.”
Lucas recognized that the health-care system was broken and fought hard to ensure that all people had access to appropriate and affordable care. Her untimely death must remind us that there is so much more work to be done.