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.
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.
The old system worked like this: Twenty CCBs across the state, from Fort Collins to Denver to Durango, received block grants of Medicaid money based on the number of people with disabilities they served. The average amount of funding per person might have been around $13,000, but the CCBs had the flexibility to spend $6,000 on one person and $20,000 on another, based on what families and social workers thought was best. The system also allowed the CCBs to negotiate service rates on an individual basis. For example, a CCB could offer to pay a caregiver more money to work with a person with significant behavioral issues and less for a person with fewer issues.
This innovative method was launched in 1997 as a solution to what had become a cumbersome and complicated way of disbursing Medicaid funds. Colorado had signed up in the early 1980s as one of the first states to implement a Medicaid "waiver" program, as it is called, allowing it to use federal dollars to assist people living at home. But by the mid-'90s, the program had gone through so many changes that it was in disarray.
Meanwhile, Congress was threatening to make radical changes to curtail Medicaid spending by the states. Amid that panic, local lawmakers asked the state to revamp Colorado's policies. The result was a network of block grants that took some power out of the state's hands and placed it with the CCBs in the hopes that increased flexibility and creativity would keep Medicaid costs low.
The CCBs loved it. Stephen Block, executive director of Denver Options, the CCB that serves Denver County, says the financial freedom allowed his organization to serve even more people than it received funding for, chipping away at a waitlist for services that numbers around 5,000 people. (In addition, the CCBs get money for operations and administrative costs, as well as other services, from private donations, grants, and the cities and counties they work with.)
But it's also the method with which the federal audit found problems. In November 2004, the Centers for Medicare and Medicaid Services, a division of the U.S. Department of Health and Human Services, instructed Colorado to develop policies that would leave a clear accounting trail. The state had until July 1, 2009. The federal agency didn't demand specific revisions; it left those up to Colorado.
"They weren't forced to change from system A to system B by us," says Mike Fierberg, spokesman for the federal Medicare and Medicaid agency's Denver office, which oversees federal programs in six western states.
The new setup is, by all accounts, less flexible. It requires all adults with disabilities to be assessed using the same tool, called the Supports Intensity Scale, or SIS. The SIS asks questions about how much support a person needs to complete certain tasks, such as eating, working and interacting with friends. It also asks about medical supports — whether someone has a feeding tube or needs help dressing open wounds — and about their mental and behavioral health. Does he or she need support to prevent sexual aggression? Suicide? Wandering?
Each person is given a score and placed at one of seven levels. The levels are tied to funding: A Level 1, for example, will receive $12,422 worth of services a year, while a Level 6 will get $26,093. Sean is a Level 4, which means he is entitled to $16,224 worth of services a year — less than half of the $35,000 he got previously.
In order to stay within the amount of money set aside for disabilities services by the Colorado Legislature, however, the state decided to assign only five funding levels for the seven levels of need. As a result, levels 3 and 4 receive the same amount of money, even though Level 4 needs are greater. So do levels 5 and 6.
It was a solution born of necessity, says Dr. Sharon Jacksi, director of the state Division for Developmental Disabilities. Colorado spends less on disabilities services than most states; a 2008 University of Colorado report ranked the state 46th nationwide. "The state appropriation does not support the total needs or cost of an ideal system," says Jacksi.
The result, say several CCBs, is that a majority of their clients — and in some cases, all of them — will receive less money than they did before.
There are other financial chokeholds in the new procedures, as well. Caregivers and other service providers will be paid a uniform rate established by the state. In some cases, that rate is lower than before, making it tough for providers to make ends meet. In other cases, it's higher, which means their clients can no longer afford the service.
Block estimates that two thirds of Denver Options' 560 clients on the live-at-home Medicaid plan will get less funding. "Organizations like Denver Options do whatever we can to get services for people," he says. "But when decisions are made that hamstring us, we're handcuffed and we can't do that. That's what's happened."
The old way wasn't perfect, says Fred Hobbs, spokesman for a CCB called Imagine! in Lafayette, "but it allowed us to stretch the dollars, to use them more wisely."
"Do we believe CCBs should be held accountable for how we spend taxpayer money? Absolutely," says Brian Hughes, development and communications coordinator at Envision, a CCB in Evans. "But...if that accountability ends up harming people or affecting their health and safety, it's not meeting its purpose."
On July 8, one week after the new system went into effect, about 150 people, many of them the parents of adults with disabilities, crowded into a meeting room at Denver Options, 9900 East Iliff Avenue in Denver. It was dinnertime, and the organization had provided cookies and cans of soda. But not many people were eating.
Instead, they were scrutinizing the handouts that explained the new rates and funding levels. The handouts showed, in many cases, that their sons and daughters would have their services cut in half and that parents would be left to pick up the slack.
Stephanie Townsend was there with her 31-year-old daughter, Sheneke, who is developmentally delayed. She listened as Block and others explained why this was happening and what the changes would mean. She listened to them say they'd tried to warn the state that the new system would have dire consequences. In the end, we couldn't do anything about it, they said. Don't shoot the messenger, they implored.
During the question-and-answer session, Townsend, who serves on the Denver Options board of directors as a parent representative, raised her hand. "What's our next step?" she asked. Would she have to quit her job and stay home with Sheneke because Medicaid will no longer pay for her to go to a day program five days a week?
"The unfortunate answer is that it will fall on your shoulders," Block said.
That didn't sit well with parents like Janet Rice, who was on the verge of tears by the end of the meeting. "I just really, really need the support," she said later. "I was counting on it for the rest of [my daughter's] life, because I had done my share."
Rice's daughter, Adela, is 25. She has shoulder-length brown hair, hazel eyes and special glasses that tint in the sun. She loves talking about boys, the Rockies and the Maury Povich show — especially the episodes where they reveal the results of surprise paternity tests. "I'm not the dad! I'm not the dad! I'm not the dad!" she says, giggling.
Rice's pregnancy with Adela was troubled from the start. Put on bed rest, Rice pored over baby-name books and eventually settled on Adela. But for years, Adela, who is hard of hearing and has trouble saying certain sounds, couldn't pronounce her name. Adela had other problems, too. When she was born, there were no soft spots in her skull, so her brain couldn't grow. Two of her vertebrae were fused. She had extra bones in her body. She cried all the time, probably from pain.
Over the years, Adela has had countless operations and intensive physical therapy. She suffered brain damage from her birth defects and can't read or write. She has severe arthritis and autistic tendencies. One of her habits is to spin things on her fingertips, like a Harlem Globetrotter. She used to do it with heavy books until the pressure caused tendonitis. Now she spins plastic blocks or crocheted potholders.
Five days a week, Adela attends a day program near her Denver home, where she hangs out with a group of developmentally disabled adults for six hours a day. They visit museums, volunteer with Meals on Wheels and participate in music therapy, Adela's favorite activity. While she's at her day program, her parents are able to work.
The program costs $20,000 a year, Rice says. As of now, Adela gets an additional $6,000 in Medicaid money, which is used to pay for a one-on-one caregiver who spends time with her for a few hours in the afternoon. Sometimes she and her caregiver go to the mall or to Jamba Juice. Sometimes they just walk and talk. "That's what has helped her to stop her angry episodes," Rice says, referencing Adela's loud outbursts at home, which occur when she's frustrated. "She's busier and not just seeing her parents."
Colorado's new funding arrangement will strip Adela of her one-on-one time. According to the SIS, Adela is a Level 2. That means she'll only receive $13,267 a year come March, when her individual service plan comes up for renewal. Rice figures that money will maybe pay for three days of day programming — and nothing else, which means she'll have to adjust her work schedule or quit her job to stay home with Adela the other two days. She'll also have to give up on her dream of finishing college.
"I feel like I'm trying to fight depression," Rice says. "I've waited most of my married life to be able to have some support, so it's very difficult to think that she'll be cut off. She's really going to suffer. But I, particularly, will suffer just as much."
Jacksi, the director of the state Division for Developmental Disabilities, which oversees the Medicaid programs in conjunction with HCPF, has heard the complaints.
She's heard that parents will be forced to quit their jobs, that the SIS is a poor tool, originally developed to assess needs, not to assign funding. She's heard that the new rates are too low in some instances and too high in others. She's listened to accusations that the state implemented the system in a sneaky way, waiting until the last minute to inform CCBs and parents of the new funding levels.
And while Jacksi is sympathetic, she says the state didn't have a choice: "The alternative is to not be in compliance" and lose about $200 million in matching federal funds — something that would have been even more devastating.
Still, Jacksi acknowledges that there have been "some unintended consequences" of the new Medicaid system. "Not all of the ramifications were known. As you go through that process, more and more becomes evident," she says.
The total appropriation is $314,100,018 (and given the state's poor economic health, almost everyone is worried that the legislature will slash the budget in the future).
Instead of doling out that money up front, however, the CCBs will only get it when they need it, and since the funding levels for so many clients are going down, they will probably need it less often. If that happens, the CCBs and parents have complained, it could be a windfall for the state, which would keep unspent money.
Jacksi says the state's projections show that all of the Medicaid money will be spent. "It's clear we're hearing from the community that they don't think that's going to happen," she says, "but because our projections say we will [use all the money], we can't raise anything or lower it. We have to monitor this on a monthly basis."
In the meantime, Jacksi says her department is committed to helping families cope with the changes. "We need to look at not just the Medicaid waiver program, but what other services and resources can we help you access? Is it Section 8 housing? Free recreation center passes?" she says. "But it's also identifying: What do you really need?...In some cases, there were things people wanted, but it wasn't necessarily necessary to keep somebody out of an institution."
Her department is also looking into boosting access to key services, such as day programs that allow parents to work while their adult children are being cared for, Jacksi says. While the state can't conjure up additional money to pay for such programs, she says it might be able to shuffle some money around. If, for example, the state finds that not many people are using the Medicaid funds set aside for horseback-riding therapy, it might be able to reassign those funds to pay for extra day programming.
But, she adds, officials won't know whether that's possible until after at least a few months of monitoring and dollar-counting. And even if they find that it is, they have to ask permission of the feds first, a process that could take a while.
More immediately, clients unhappy with their new funding levels can opt to dispute their SIS assessment score.
None of these suggestions have made parents happy.
"I don't know Sharon Jacksi. I'm sure she's a wonderful person," says Mick Wenlock, Sean's father. "But these systems only work if someone is going to stand up in the middle of it all and say, 'Wait a minute.' The thing that bothers me about Jacksi and Hufflepuff or whatever and [Governor Bill] Ritter is that they're not stepping up to fight for the people being screwed. They're not standing up for the Seans.
"Only in some Orwellian fucking dream would you say this is support."
It's Saturday afternoon, and Sean is sitting on the living room floor. He's wearing red athletic shorts and a T-shirt from Cozumel — a gift from Doc. Even though it's hot enough that his parents have turned on several fans, Sean's legs are covered by a faded pastel comforter. He carries it everywhere, so much so that his mother calls him Linus.
"He's very good at hanging out," Mick says. "I don't know what he's thinking."
For the next hour, Sean sits silently, his blue eyes seemingly looking forward. Sometimes he shifts his position. Sometimes he sneakily sticks his fingers in the slats of a box fan. He occasionally holds up his cup to ask for more fruit-punch-flavored Gatorade, which he'd drink by the bucketful if his parents would let him. He can't hear the conversation, and although he can make out colors, he can't see anything else.
Sean communicates by touch and a handful of signs that took years to master: three fingers held up to his chin is "water," two fingers tickling his palm is "walk," one finger stuck through the V of two fingers on the other hand is "banana."
He's calm on this Saturday because he gets so much interaction during the week, his mother says.
Sean's weekdays are structured like this: He wakes up by 5 a.m. and waits in his sparse bedroom while his dad gets ready for work. After that, he is with his mom until Doc picks him up. On good days, Sean and Nancy go outside and feed the horses penned in the backyard of their modest Byers home. On bad days, they don't do anything.
At 10:30, Doc arrives and takes Sean to an Aurora Subway, where Doc orders Sean a twelve-inch sub with all the fixings. Then they head to the park, followed by the pool. When it comes to the locker room and the bathroom, Sean needs to have a male caregiver help him out. A woman — even his mother — can't accompany him into a public bathroom. At 4:30, Doc drops Sean off at his dad's work.
When Sean and Mick get home at 5:30, they take the dogs for a walk, eat dinner — Sean is a food connoisseur; he loves hot curries, Mexican food and sausage — and then relax. At least two nights a week, Sean gets up every hour, creeps into his parents' bedroom and slowly tugs at their comforter until they wake up, meaning his parents have to guess the problem. Often, Nancy will stay up with him so Mick can get some sleep before work. Sean also regularly wets his bed, which necessitates a bath.
The time Sean spends with Doc during the day is a godsend for the Wenlocks. Without it, Sean can be difficult to handle. "If he doesn't use his energy, he gets so wound up," Mick says.
It's also a godsend for Doc. "This is my calling," he says.
Doc is a 51-year-old former Navy man and rock guitarist who became a caregiver ten years ago. At the time, he was involved in a network marketing company that sold long-distance phone service. He was at a company meeting when a man overheard him say something about wanting to give guitar lessons. The man approached him and told him about his then-25-year-old son, Colin, who has cerebral palsy.
Doc started teaching Colin to play the guitar — and his career took off from there. He now works with six developmentally disabled men who range in age from 29 to 61, taking them to the rec center to work out, shuttling them to tae kwan do lessons and tutoring them in math and reading. To see them all, he works twelve hours a day, six or seven days a week. On his days off, he sometimes takes them fishing.
"These guys deserve a life, too," he says. "These guys were already handed — you could call it a bad hand or whatever. I'm a facilitator. A catalyst."
Now he'll have to do his facilitating for less money and possibly group together the men he currently sees one-on-one. Group activities often aren't ideal for people with disabilities because they tend to have very specific needs, he and other advocates say. The state "made all these changes and said to providers like myself, 'Okay, here's less money and more work, and if you can stay in the game, good luck,'" Doc says. "I've said [to my clients], 'I don't know how this will affect us, but I'm still in the game.'"
Some advocates, CCBs and parents aren't ready to give up, either.
The Wenlocks and other parents have sent letters and e-mails to Governor Ritter, Sharon Jacksi, Senator Michael Bennet and Representative Diana DeGette.
Their anger and frustration come across loud and clear. "Your agency has come along and made major changes — no consultation, no information, just major havoc created in both our life and our son's," Mick Wenlock wrote to Jacksi in mid-June. "I do not think you or your staff appreciate what it is you are doing."
The Wenlocks also started a Facebook page and a website, www.SeansVoice.org, that describes the situation and encourages visitors to contact government officials.
Jacksi has followed up by asking questions about Sean's care and attempting to explain the situation. Ritter's office sent a form letter asking for more time to look into it.
Ritter's office referred questions from Westword to HCPF, where spokeswoman Joanne Lindsay gave a cursory explanation. "In order for the waiver to be approved, we had to make the changes requested by (the federal) CMS," she wrote. "Had we not, the program would have been in jeopardy."
None of it is what the Wenlocks want to hear. "The problem is NOT going to be solved with a phone call and with a few uninformed suggestions to us," Nancy wrote recently on her blog, the Sean Project. "We have dealt with Sean for 29 years. Who do these administrative people think they are dealing with? Complete MORONS? Well, they are NOT helping. They are suggesting things without a clue about what we deal with every day, without a clue about who Sean is."
But state officials aren't the only ones short on suggestions on how to fix things.
"Right now, I don't have an answer," says Aileen McGinley, executive director of the ARC of Denver advocacy group. "I wish we could have more of the federal money." In the meantime, she says, "it's a matter of doing the best we can with what we have."
Some people believe the state can and should tweak the procedure. "If they made the decision this way, they can make the decision a different way," Block says. "I don't know why the state has to be wedded to doing something one way if it's causing harm."
Reiskin, of the Colorado Cross-Disability Coalition, definitely thinks tweaking is in order. She'd like to see more SIS levels — and more differentiation in the funding tied to them. She also wonders whether parents need better instructions on how to answer SIS questions about their adult children. Some parents, she says, didn't understand the questions — or the ramifications of answering them a certain way.
Jacksi says her only option is to wait and see. She promises that state officials are tracking Medicaid expenditures on a monthly basis, and if they find, as the CCBs suspect, that they're spending less than they have projected for the program, they can adjust the system.
But for now, it's too early to know. And some worry that by the time the state figures it out, it'll be too late.
