Disability amplifies family’s health challenges
For Margaret Williams, caring for her 31-year-old son Christopher, has been a full-time job for nearly a decade.
On July 4, 2006, Christopher was involved in a catastrophic car accident that threw him out across Interstate 25 near Pueblo.
After a series of life-saving surgeries, Christopher went comatose. First, he was placed in a hospital, then in a series of care facilities. Concerned about his treatment in the facilities and convinced her son could thrive, Margaret Williams eventually brought Christopher to his childhood home in Colorado Springs.
Now, Christopher can speak in short phrases and smile. His bedroom – a converted garage made wheelchair accessible with the help of a group of Habitat for Humanity volunteers – is covered in photos of the late rapper Tupac Shakur and advertisements/posters for Joe Boxer underwear brand. (He loves the Joe Boxer logo, a yellow happy face, because of the smile, he says.) He is assisted by various caretakers, including music therapists, a nurse, and certified nursing assistants who help with everything from simple cognitive exercises to medical care to household tasks like laundry.
Margaret Williams characterizes Christopher’s return home as a miracle, facilitated by a number of angels who helped the family obtain housing, a wheelchair-accessible van, and employment for Margaret.
But getting Christopher home — and maintaining the kind of medical care that supports him without overwhelming Margaret — was also an ordeal that involved an unimaginable amount of paperwork, advocacy – and emotional strain.
That’s where the Colorado Cross-Disability Coalition came in. CCDC helps Coloradans navigate the bureaucracy that disabled individuals and their caregivers often encounter in trying to participate in their communities. CCDC also advocates for better policies and access to care for disabled Coloradans. “We have more in common than differences,” said Donna Sablan, a patient advocate with CCDC.
Many disabled Coloradans are in dire economic straits. Just 25 percent have full-time full year jobs, and those that do are paid a third less than their peers, according to Julie Reiskin, the executive director of the Coalition.
That can in turn have a negative impact on physical and mental health, Sablan said. Lower-income Coloradans live between 10 and 15 years less than the rest of the state.
The recent addition of Colorado’s Medicaid program that allows disabled adults to earn and save money and buy into Medicaid should let more disabled people work while retaining their benefits, according to Sablan. That’s a big positive change. “The system wanted you to become broke and poor and stay home and complain about it,” she said.
Reiskin said that the Colorado Cross-Disability Coalition is increasingly using a racial equity lens to frame its work, which has illuminated the fact that “every time you talk about statistics for people with disabilities – employment, health outcomes– the numbers are even more horrific, and that’s not acceptable.”
Research has found that differences in health outcomes between whites and communities of color are smaller than the disparities found among high and low-income populations within racial and ethnic groups.
Though help is available to individuals with disabilities through Medicaid and other programs, making sure that people get access to those benefits is not always so simple.
The Coalition helps disabled Coloradans identify if they are eligible for Medicaid or other health benefits. CCDC also notices glitches – such as inaccurate copays – that affect many individuals.
“We see when problems are not individual problems, but also a systems problem,” Sablan said. The organization is in the early stages of creating a wiki where people can share the most up-to-date information – a necessity when regulations and rules change regularly.
The majority of the CCDC’s employees are disabled themselves. Often, people have come to the Coalition as clients and then become volunteers. Sometimes, as they learn to navigate the unwieldy systems that govern health care, they become staff.
For someone like Margaret Williams, the empathy that comes from shared experience is invaluable.
Caring for Christopher has cost millions of dollars. “It means you go without – you don’t take trips,” she said. Williams, who prepares taxes for a living, said it took her eight years to save up enough money to buy a van to transport Christopher around town.
Some people don’t understand the lengths Margaret has gone through to to get the best available care for her son.
” You’re always being underestimated,” she said.
But with the help from CCDC, Margaret says she has improved her quality life and the life of the son she loves. Advocates with CCDC pushed to change the Williams’ benefits to let her hire nursing assistants directly rather than go through agencies that might have left her high and dry financially. CCDC also helped her locate insurance when Margaret’s own health began to falter.
Williams is considering becoming a CCDC advocate herself and hopes to provide comfort for “people who aren’t as fortunate to have these angels step in.”
“The advocates help to strengthen people that are trying to fight and feel they just can’t do it,” she said. “They step in when you’re down.”
-By Jackie Zubrzycki