From The Desk of Pamela Bisceglia
At different times, over the years, I had an opportunity to stand with Carrie Ann Lucas on issues important to the community of individuals with disabilities. I cannot report that we were Facebook friends, we did not meet for lunch or dinner or discuss our personal lives. I knew Carrie as a bright, firm, determined parent, attorney, advocate, and community leader. If there was a question in relation to the rights of parents with disabilities, Carrie was the expert.
On February 24, 2019, Colorado Cross Disability Coalition issued the following statement:
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 healthproblems, exacerbating her disabilities and eventually leading to her premature death. She was 47 years old.
Carrie Ann had hoped to spend a lot of time in 2019 using her tragedy to work to fix our broken health care system.
On October 20, 2016, the headline for AdvocacyDenver’s Policy Perspective was: Advocate Urges “NO” Vote on “End of Life” Proposition:
Carrie Ann Lucas, an attorney and self-advocate, has over 20 years of expertise working for disability rights organizations. She is also on the [B]oard of Not Dead Yet, a national grassroots disability organization. Ms. Lucas is strongly opposed to Colorado’s Proposition 106. In an interview with Catherine Strode, she calls Proposition 106 “dangerous policy” and discusses the lack of safeguards for Colorado’s most vulnerable populations.
I reread this 2016 interview and it struck me that some of the narrative holds true when speaking about our health and insurance systems. Carrie said:
I think it should have to be someone’s primary care physician with whom someone has been in a doctor/ patient relationship for some time . . . . Anyone who has been in a hospital knows that whatever doctor comes into your room for five minutes at the beginning of the shift, that’s your “attending physician.” It doesn’t mean they know anything about you.
I am a quadriplegic myself. I am also the parent of four children with disabilities. Those of us who are disabled, and have family members who are disabled, see how our lives are devalued by the medical system.
As noted on Carrie’s Facebook page, “on February 24, 2019 [she] 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.” I am appalled that any insurance company is able to trump a physician’s order. I am outraged that public and private insurance companies have the authority to determine what, if any medical procedure or measure will be taken, prescriptions they will or will not fund, or rehabilitation services they will receive.