Born two months premature with cerebral palsy, Kristen Castor has never qualified for private health insurance.
Despite a lifetime of roadblocks, Castor, 54, has always fought for what she needed. Long before the Americans with Disabilities Act, principals barred her from attending her neighborhood schools. More than once, she had to prove that her brain was powerful and that she could climb stairs like any other student, albeit more slowly.
Castor went on to graduate from high school with honors, major in Greek and Latin in college, earn a master’s degree in linguistics and serve in the Peace Corps in Liberia for three years. She taught English in Africa, then later to immigrants in the United States before becoming a disability rights advocate in Pueblo.
For years, Castor barely saw doctors to avoid medical expenses. But she recently needed knee surgery and faces having to get the other knee operated on soon. As well, her shoulders are worn down from 50 years on crutches, requiring rotator cuff surgery.
Castor received an inheritance when her parents died a decade ago. She bought a modest ranch home and has been remodeling it to make it accessible for the wheelchair she sometimes uses. She wants to be a responsible citizen, save and invest the small amount of cash left from her inheritance and pay her own way in life. But she faces heart-wrenching dilemmas: spend down her savings to qualify for Medicaid or continue skipping vital health expenses—such as mammograms and pap smears—to conserve her cash, keep her house and stay financially solvent.
“I’ve skipped my pap. I don’t have the money. I need to pay my bills first,” said Castor, who participated in a Trust-funded study conducted by the Colorado Center on Law & Policy to help policymakers, health advocates and consumers understand the factors that influence Coloradans’ ability to pay for health coverage.
Castor is also overdue for a mammogram. “It’s the same thing. I’m going to have to pay a co-pay and I don’t have it.”
To help bring in more cash, Castor has started renting out a room to a student for an extra $100 per month. She has to share a bathroom with her boarder and sacrifices privacy. But, she says any extra money helps as she tries to pay her mortgage and medical expenses, maintain her 18-year-old van, pay off thousands of dollars from the last knee surgery, adapt her home for wheelchair access and save for future medical expenses.
Through her work for the Colorado Cross-Disability Coalition, Castor has encountered many people with similar dilemmas who would fare much better and save the system money if they received consistent, preventive care.
All her life, Castor has fought for access for the disabled into schools, the workplace and public transportation. She believes that achieving health coverage for all is one of the final frontiers for equal access—adequate health care will give more independence and dignity to both the able-bodied, and those with physical and mental challenges.