Colorado's new Medicaid funding plan will leave disabled adults on the outside

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.

Ellen Jaskol

See more photos of Sean Wenlock at westword.com/slideshow.

Ellen Jaskol

Nancy Wenlock needs help caring for her son, Sean

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More About

• Sharon Jacksi
• Medicaid
• Janet Rice
• Disabilities
• Welfare Policy

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.