The Cost of Caring for Wesley

It is diaper-changing time, and 8-year-old Wesley Hilling is full of smiles. Not so, his bone-weary parents.

Until a few years ago, diapering their severely disabled son was relatively easy. But now it often takes both of them to change Wesley, 65 pounds of thrashing limbs and writhing torso. And he is growing fast.

Still, diaper duty is only one of the unending challenges for Hogan and Tina Hilling, whose second son has Angelman’s syndrome, a rare genetic disability characterized by palsy, seizures and a host of other disorders.

Wesley’s ever-present smile and laugh--characteristic of Angelman’s--belie the danger he poses to himself. Unable to walk unassisted, he nonetheless is constantly moving, rocking, pulling himself up or grabbing at people and things. In an instant, he could fall down, yank a hot pan off the stove, pull a sharp or heavy object onto himself. He is unable to speak, nor can he dress or feed himself. He will always need someone to take care of him.

“We have a child who will need us our entire lives,” Tina Hilling said. “He’s going to outlive us and still need us, even then.”

The Hillings are not alone. In Orange County, about 3,900 children and teenagers with all variety and degree of developmental disabilities live at home with their families. More than 2,400 developmentally disabled adults likewise are cared for by a family member. Some 3,360 children and adults--the remainder of the county’s 9,700 developmentally disabled--live in group homes or other care facilities.

For those who have the day-to-day duty of caring for their disabled children, their lives are also filled with repeated trips to doctors, a maze of government bureaucracies, mountains of paperwork, piles of unpaid bills, uncounted hours spent trying to get insurance companies to cover procedures or equipment, and unknown years of work and worry above and beyond the norm for parents.

But for all their trouble, these parents know exactly what kind of assistance their vulnerable children are receiving. They know that the care comes from loving relatives, not strangers. And they have their children under their roof to love and to be loved back.

“With a disabled child, it’s a different kind of love,” Hogan Hilling said. “I love each of my children, but with Wesley, I feel a different kind of love.”

The Hillings have to take care of Wesley much like they took care of their other two sons when they were babies. And then some.

They feed Wesley, change his diapers about five times a day, dress him and lug him into and out of the bathtub. They give him anti-seizure medicines and monitor side effects and progress. They lift the growing boy into and out of their car, and do the same with his 100-pound wheelchair. They teach and entertain him with toys, books and outings into the neighborhood.

They wake up at night when Wesley does--and he always does--and get him settled back to sleep. Then morning comes and they do it all over again.

Home Care Costs Exhaust Family

The Hillings fret about not paying enough attention to their other sons, 10-year-old Grant and 4-year-old Matt. They worry about how to make ends meet. They steam over how difficult it is to get more services and assistance from public agencies. They forgo vacations, gifts, entertaining and other luxuries because they can’t afford them. They grow accustomed to not finishing sentences because Wesley is continually pulling on their arms and needing something.

Through it all, they worry about how much longer they will be able to take care of Wesley. They are emotionally, physically and financially exhausted. The day will come, they acknowledge, when they will have to place Wesley in a group home, where his care would be paid for by the state. Ideally, they will do this when Wesley is a teenager. But they question whether they will be able to wait that long.

For the Hillings say there is a price they pay for keeping Wesley at home: financial desperation they cannot escape. Even though the Hillings receive assistance through several government programs, it is not enough.

Hogan--a stay-at-home dad who received a commendation from Gov. Pete Wilson three years ago for his work with a fathers group that offers parenting advice and support--blames the system.

It is as if families are being penalized for keeping their children home, Hogan says. He asks: Why do families have to struggle to care for their own disabled children when they are saving the state thousands of dollars every year by keeping them out of government-funded group homes?

How much? The amount of state funds spent on those who live at home with their families averages $2,343 a year. The cost for care in group homes (called community care) averages $13,195. To keep a child in a nursing home, the figure goes even higher.

The Hillings know that the state simply cannot pay them the difference between those two costs because government regulations prevent using group home funds for in-home family care. They also know that group homes provide more expensive round-the-clock care for the disabled than the Hillings provide at home.

The Hillings have a better-than-average understanding about where the state money comes from and where it goes. But it doesn’t change the fact that caring for Wesley at home means they are paying out far more than the government provides.

For example, the Regional Center of Orange County gives them $489 a month--equivalent to 80 hours a month at $6.12 an hour--for baby-sitters. But they pay $10 an hour for the sitters because Wesley requires so much care, or $300 a month out of their own pockets. Bill Bowman, executive director of the agency that coordinates services to the developmentally disabled, said the payments are supposed to supplement parents’ child care costs, not foot the entire bill.

Even private medical insurance and Medi-Cal doesn’t pay all the costs.

Wesley needed a specially designed wheelchair costing $5,000. The family’s medical insurer initially refused to cover it. One appeal and eight months later, the insurance company agreed to pay for a less expensive chair, still leaving the Hillings to pay a deductible of about $1,000. Their friends covered the cost with a fund-raiser for Wesley.

Wesley’s diapers cost roughly $1,100 a year. It took the family several months to get all the approvals--and most important, a letter of denial of payment from private insurance--before Medi-Cal would pay for them.

Making Do With Less to Support Three Boys

Throughout the years, the Hillings have radically changed their lives to better afford Wesley’s care. Hogan gave up his wallpaper installation business to stay at home full-time. They live on Tina’s $48,000-a-year job as a speech therapist with the Irvine Unified School District, which provides medical insurance.

They cut back on housing expenses by selling their first house, in the new Westpark area of Irvine, and moved into a single-story house in an older part of the city, costing $25,000 less, reducing their monthly mortgage payment and cutting their property tax bill.

They own one car, a used 1993 Dodge Caravan minivan. Hogan spends much of the day driving Tina and sons to their various schools. Tina often winds up walking the mile home from school.

Their three-bedroom house has been “Wesley-proofed.” Their kitchen was remodeled, a Christmas gift from Hogan’s parents, with waist-high doors at all entrances so that they can keep Wesley locked out and cook dinner without worrying about him suddenly putting a hand on the stove. They installed $400 worth of Dutch doors on all other rooms.

Throughout the house, all tables, counters and shelves within Wesley’s reach are kept clear of knickknacks, books, anything that Wesley could damage or swallow or hurt himself with.

“He loves books,” Tina said. “But he wants to chew on them too.”

Wesley has gotten hurt occasionally, despite their best efforts. Once he scalded his knees during a bath when he suddenly grabbed the faucet, even while Tina was in the bathroom. Another time he was found crawling along the sidewalk down their street, when one of his brothers left the garage door open. Wesley always has bruises from pulling himself up to stand, then tumbling down. The accidents have been limited, the Hillings said, because they keep him under constant watch.

Even Help With Care Falls Short of Need

Caring for Wesley is a round-the-clock job, except for the six hours Wesley spends each weekday in special education and mainstream classes at two Irvine elementary schools.

After school is over, a college student helps out each afternoon, essentially to be an extra set of hands in the hectic household. Hogan had back surgery for a ruptured disc three years ago and is not supposed to pick up Wesley, who is heavy and shifts continually because of his palsy.

Weekends are the hardest. Even with 24 hours a month of respite care provided by a nursing agency--paid directly by the Regional Center--the help is not enough.

Unless such care has been arranged at least days in advance, Tina and Hogan take care of Wesley and their other two boisterous boys with no break.

“I make it through few weekends without tears,” Tina said, as Wesley tugged on her arms.

It is tough just to leave the house. Spontaneity is out.

“If it’s a nice day, I can’t just say, ‘Let’s go to the park for a picnic,’ ” Tina said. Taking Wesley along means lots of preparation. Leaving him behind means one parent has to stay home.

Their other sons understandably get angry or disappointed.

“It’s annoying,” said Grant, the oldest. “Other kids get to go out, go to theme parks or other places. And all we ever get to do is stay home.”

The social isolation is hard, Tina agreed.

Even joyous occasions such as Christmas at Grandma and Grandpa’s are difficult. Other houses are full of objects Wesley can break, hurt himself with, or choke on. So Hogan and Tina, instead of enjoying a social visit, have to keep an even closer eye on their disabled son, making the visit tense and conversation impossible.

“Going to other people’s houses is a nightmare,” Tina said.

Getting through the day with Wesley is difficult enough. What adds to the frustration is the web of public and private agencies with interwoven programs for the developmentally disabled that must be navigated.

A Maze of Agencies Confronts Parents

In Orange County alone, in addition to Regional Center, there is Cal-OPTIMA for dealing with Medi-Cal, and the Orange County Department of Education, which provides special education programs. Depending on the type and severity of the disabilities, there are myriad other state and federal agencies to grapple with. Bowman of the Regional Center said his agency is working to better coordinate responsibilities with other government entities.

“Sometimes trying to get services is just not worth it. It takes time away from other things we need to do,” Hogan said. Tina, with her background in special education, handles the abundant paperwork and phone calls on her lunch hours.

“At least I know the lingo and I know how the system operates,” she said.

Recently, Tina and Hogan have been seeking more day care allowance or respite hours. Just the other day, they were denied coverage under a federal program.

“What troubles me is that if we ask for more, they look at us like we’re trying to take advantage of the system,” Hogan said. “They look at us on paper and they say that everything seems OK, that we’re handling things well, what do we need help for? They should come in for a day of changing diapers, picking him up, doing everything that has to be done. After an hour, they’re going to be exhausted.”

“We’re not asking for the easy way out for us,” added Tina, as Wesley continued to tug on her. “Even if we had 24-hour-a-day help, this would not be an easy life.”

Their marriage has survived, and maybe even become stronger, they said, because they realize that they must be a team to make it all work.

Hogan said 80% of parents of disabled children divorce because of the added stress; therapists say there is no verifiable statistic but that the divorce rate is indeed higher.

“It’s hard for us to have any time together,” Tina said. “We have to accept that our marriage right now is different from what it was 10 years ago.”

Working together, they have helped Wesley thrive. At El Camino Real Elementary School, fellow second-graders incorporate the boy into their studies and playground activities, wheelchair and all. When the Hillings take Wesley to the local Ralphs, all the grocery checkers say hi to him, and Wesley beams. Neighborhood kids and adults approach and talk to him when he ambles outside, supported by a walker, parent or helper. Wesley smiles at the children at play, even if he cannot talk or join them.

Occasionally when Tina takes the other two boys out for an evening, Hogan said, Wesley will crawl through the house, looking for his brothers. “He wants to be with them. You can see it in his eyes,” Hogan said. “He knows he is part of a family.”

Still, with eyes moistening, the Hillings say they realize they will not be able to keep their family intact forever.

“I know there will be a time when I can’t handle Wesley,” Tina said. Ideally, they said, they will be able to keep him until he is a teenager, when he normally would want to leave his parents.

“The other two boys will leave, too, eventually, but they’ll do it on their own. With Wesley, we’ll have to do it for him,” she said.

Sometimes they think that day will come sooner than later.

“There are times when I think, ‘I can’t do this anymore,’ ” Hogan said. “But then I see him there sleeping, and I think, ‘What if he were to wake up, looking for us, and we weren’t there?’ And then I think, ‘OK, maybe I can do this one more day.’ ”

(BEGIN TEXT OF INFOBOX / INFOGRAPHIC)

Help Available

The Regional Center of Orange County, with an annual budget of $71 million, offers services to developmentally disabled children and their families.

* Service and program plans: Individualized plans for entire families with children 3 and younger, and for disabled children 4 and older, to identify needs and design a course of action.

* Respite: Child care that allows families to get away from the house for a few hours or longer, while a nurse provided by an agency looks after the disabled child. Usually families are given up to 24 hours per month, which can be banked for extended outings.

* Day care: Financial assistance to households with employed parents. This funds beyond what parents would have to pay if their child were not disabled, so that specialized care may be arranged.

* Behavior intervention: Training for parents whose children have aggressive or inappropriate behavior connected to their disabilities.

* Referrals: Information about other agencies that provide services such as physical therapy and family support.

* Transportation: Driving infants to therapy. After a child turns 3, the public schools must provide therapy and transportation until the disabled person turns 22.

* Building modification: Help with constructing wheelchair ramps or other remodeling to accommodate a child’s needs at home.

* Parent education: Information provided regarding conferences, support groups, forums, video library, and parent-to-parent support.

Source: Regional Center of Orange County; Researched by MARCIDA DODSON / Los Angeles Times