Budget cutters should spend a day with a family with disabled kids

Melissa Wasilevich is a married woman with three children who would like to invite Gov. Jim Gibbons to spend the day with her family from dawn until the last child falls asleep. “How can he make decisions that will so critically affect our family and not even know our needs?” she asked.

Melissa’s needs are greater than most.

She’s disabled. At 39, she has a degenerative spinal condition. And she has three disabled children.

Daniel, 9, is blind, has cerebral palsy, epilepsy and can’t speak.

His almost 4-year-old sister Lisette has juvenile rheumatoid arthritis. She doesn’t understand the pain she feels at the end of a day because she’s always known the pain.

Parker, 17-months-old, is deaf and has kidney hydronephrosis. He’s worn hearing aids since he was 3 months old and had a cochlear implant when he was 10 months old. His next implant is next month. If he can hear, he has a much better chance of living a more productive life.

The family schedule revolves around medical appointments, not soccer games.

The Wasilevichs are lifetime Nevadans, and Melissa’s husband, also named Daniel, is a welder at the family business, A Welding Shop, which opened in 1964.

He has insurance. But for the 2006 tax year, the family’s out-of-pocket medical expenses totaled $63,000, more than the family’s income. And Parker hadn’t been born yet. That’s not just a one-year oddity. Melissa said their out-of-pocket medical expenses are running every year between $38,000 and $63,000. To pay medical bills not covered by insurance, they use credit cards. They now carry about $50,000 in medical debt on those cards.

Yet Melissa said they’re blessed. Her husband’s parents, Dan and Rita Wasilevich, helped them buy a lovely home last year in Los Prados when it became clear they needed a larger one-story home for their family and to accommodate Daniel’s wheelchair. Instead of retiring, the grandparents (Dan is 68, Rita is 67) keep working to help their son’s family.

On the wall in the dining room, three hard to ignore words are spelled out in black letters five inches high: Live. Hope. Love.

With one working parent, insurance, supportive grandparents, state and federal programs, they are getting by financially but living lean.

Melissa, a former insurance company manager, can’t find out yet what the first $914 million in state budget cuts starting July 1 will mean to her family. She’s dreading the upcoming special session of the Legislature because she is positive the additional $250 million cuts will affect disabled families, directly or indirectly.

Melissa’s husband knows this: “They will always first take from the ones who can’t speak for themselves.”

The family qualifies for certain state and federal programs to help families with disabled children. But as the pot of money shrinks, she fears it will be harder for her children to qualify because the standards will be increased. Families whose children aren’t “disabled enough” will be dropped.

Will they no longer qualify for any respite care? Will her son Daniel be cut from programs that provide an occasional horseback ride or some other outing to stimulate him? What will happen to him in school?

She has this message for all the politicians: The Mama Bears are poised and ready to do what it takes to protect their cubs.

“We are not going to sit by and simply watch you strip our special children of the medical coverage, benefits, education and services that they deserve. They are not second-class citizens,” she wrote in the middle of the night, her Blackberry steaming.

“This is much broader than just our family and our financial woes. When you have a disabled child and spend what seems like a lifetime in physical therapy, speech therapy and doctors’ offices you learn one thing very quickly — there is always someone worse off than you.”

Governor, what about it? Like to spend a day with the Wasilevich family? Eat some macaroni and cheese with the kids? Listen to music with Daniel as he rocks back and forth, sightless? Play with Lisette? Hold sweet Parker on your lap? Hear Melissa and her husband, both Republicans, talk about how they manage their budget?

The Wasilevich family knows something about budget cuts.

They know they’ll make more budget cuts of their own after the reality of the state’s $1.2 billion in reductions filters down to working families like theirs.

Jane Ann Morrison’s column appears Monday, Thursday and Saturday. E-mail her at Jane@reviewjournal.com or call (702) 383-0275.