Sean Wenlock stands at the end of a seafoam-green diving board, his toes curled over the edge like upside-down question marks. He's still. He looks like he's contemplating something, but it's impossible to know what. The 29-year-old in the red-and-black swim trunks with the flames on the sides couldn't tell you if you asked.
Ellen Jaskol
Ellen Jaskol
Nancy Wenlock needs help caring for her son, Sean
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Doc Davis, Sean's caregiver, climbs onto the diving board behind him. He steps hard on the opposite end and Sean's six-foot, 199-pound frame bounces up and down. Sean flaps his hands and then leans forward. His toes unhook and he tumbles toward the water, bending his knees like a frog at the last moment. Splash! Sean is underwater for a few seconds before his head bobs to the surface. He doesn't smile, laugh or make any sound at all. He just cocks his head back and points his nose toward the fluorescent lights that hang from the ceiling of Aurora's indoor Beck Pool. Then he begins to glide.
Sean was born deaf and blind after contracting the rubella virus in utero. At the pool, he can't see the gray-haired ladies in shower caps doing water aerobics in the shallow end. He can't hear the squirmy kids in drying bathing suits giggling as they wait for the aerobics lesson to end. But he's had lifelines, people to help him experience the things he can't see or hear: his parents, his brother, his teachers and friends. And his caregiver Doc, who's been by Sean's side, communicating with him through gentle nudges, high-fives and simple sign language, for eight years. Every day, after a lunch of sandwiches and bananas in a nearby park, Sean and Doc go to Beck Pool to swim for three hours. Without that daily exercise, Sean won't sleep. Without the interaction with Doc, he'll get bored, frustrated and destructive. He might rip the furniture. He might pinch his parents. He might bang his head on the ground. Over and over and over again.
Come November, that lifeline will be cut in half. Because of recent changes in the way Colorado distributes Medicaid money to adults with developmental disabilities, Sean will only be able to afford Doc's services two days a week instead of five. He'll probably spend the other three weekdays at home with his mother, Nancy, a feisty and tireless advocate who doesn't favor that scenario.
"Nobody who is 29 wants to be around his parents all the time," Nancy says, trying to make light of the situation.
There could be darker consequences, too. At 55, Nancy and her husband, Mick, who works in information technology at National Jewish Health in Denver, can no longer keep up physically with their full-grown son — especially since, like many deaf-blind people, Sean has an imprecise sense of night and day and tends to wake up in the middle of the night looking for help and attention. Over the years, they've gotten used to Sean's nighttime escapades — as a kid, he once snuck out to the apartment-complex pool at 4 a.m.; another time, he crashed through a picture window while swinging on a therapy swing in their living room — but the lack of sleep wears on them, making them less capable of caring for Sean during the day.
"It's relentless," Mick says. "Sean is going through his life, and every minute, someone needs to be there."
If Nancy and Mick don't get the support they need, they will no longer be able to be that someone. That someone will most likely be an institution — the exact situation the Medicaid program Sean is enrolled in is designed to prevent.
In 2004, the federal Centers for Medicare and Medicaid Services did a routine audit of Colorado's Medicaid programs for people with developmental disabilities. The state has three: one for children, one for adults who live in group homes or institutions, and one for adults who live at home. Sean and about 3,800 other Coloradans are enrolled in the one that enables them to live with their families, which costs the state four times less than if they lived in institutions. It pays, with a mix of federal and state money, for services such as day habilitation programs, job coaching, transportation and certain types of therapy.
What the audit found wasn't good: inadequate oversight, inconsistent recordkeeping and poor financial accountability. Advocates had other complaints, too.
"The system before was way too loose," says Julie Reiskin, executive director of the Colorado Cross-Disability Coalition, a Denver-based advocacy group. "The flexibility went way too far. Nothing [was] in writing."
"I thought it was very mushy," adds Carol Meredith, executive director of the ARC of Arapahoe and Douglas County, an advocacy group in Centennial. "You couldn't figure out what was going on. It wasn't consistent from place to place."
The feds didn't point fingers, but they did insist that the state fix the problems, so the Colorado Department of Health Care Policy and Financing, HCPF (pronounced "hick-puff"), convened a steering committee to do just that. The committee was mostly made up of state human-services officials and employees of the private, non-profit agencies known as community-centered boards, or CCBs, that contract with Colorado to provide those services. The goal was to come up with new policies that would pass muster with the feds.
