THE VIRGINIAN-PILOT
Copyright (c) 1996, Landmark Communications, Inc.
DATE: Tuesday, June 25, 1996 TAG: 9606250051
SECTION: DAILY BREAK PAGE: E1 EDITION: FINAL
SOURCE: BY ALISON BOLOGNA, STAFF WRITER
LENGTH: 132 lines
IT'S HARD enough to raise a family when your husband gets deployed throughout the year and you are left alone to hold down the fort; it's even harder when some of the people in your family aren't healthy.
That's what thousands of military moms in Hampton Roads face every day: caring indefinitely, often on their own, for their children who are so sick that they will most likely never be able to live independently.
The Navy has responded to the problem by assigning families with ``special needs'' - like chronic illnesses requiring ongoing medical care - to bases equipped to care for them. It's called the Exceptional Family Member Program, and its overriding purpose is to improve a sailor's quality of life.
But some of the program's participants say that doesn't always happen.
Tammy Pauley, 23, and her husband, Bryan, 28, have a 5-year-old daughter, Kellsey, who has been diagnosed with quadriplegic cerebral palsy. Day after day, Kellsey sits in a wheelchair and wears a vest around her neck to support her head.
Tammy can't go grocery shopping because she can't move Kellsey's wheelchair and a cart at the same time. Eating at a restaurant is out, because Kellsey can't eat solid food through the tube that sticks out of her stomach.
Even basic household chores become a mountainous task when Bryan is deployed.
``I call the doctor once every day,'' Tammy said. ``I also take Kellsey to therapy a few times each week. She's been poked so many times that she's used to it.''
The Pauleys have qualified for the Exceptional Family Member Program because Kellsey's illness is long-term and serious.
``This isn't for a child who breaks his leg,'' said Glen R. Rovig, director of the program. ``It's only for those people who really need our help.''
In other words, it's for families like the Pauleys who have members with severe sicknesses like cancer, leukemia or heart disease. That includes about 4,000 families in Norfolk.
Although Tammy Pauley said that the program has been beneficial, she also said that just being in the Navy, with her husband overseas often, is grueling.
``It's part of being in the Navy,'' Tammy Pauley said. ``Bryan knew when he enlisted that we wouldn't get any special privileges.''
That's not entirely true. Thanks to the program, the Pauleys were able to move into military housing as soon as they arrived in Norfolk, which meant avoiding wait lists - some as long as a year.
Rear Adm. Robert Cole, commander of the Norfolk Naval Base, has begun speaking with exceptional families and working to get special playground equipment on the bases.
``The system was broken before we started,'' he said to family members at an April 8 meeting at the Portsmouth Naval Hospital. ``The system isn't doing all it can do. We've got some wind beneath our wings, but it's not blowing very hard.''
Cole said that he's been educating himself about the program with the help of Tammy Pauley and another Exceptional Family member, Tammy Sebesta.
Tammy and Paul Sebesta, friends of the Pauleys, also have a disabled child, 4-year-old Jacob.
``Every time I turned around, there was another diagnosis, another MRI, another blood test,'' Tammy Sebesta said. ``I've been told that he had mild cerebral palsy, mental retardation, and one doctor even diagnosed him with attention deficit disorder.''
Now, Jacob is diagnosed with heart disease. For him, as for Kellsey Pauley, hospitals have become second homes.
``Going to the hospital is all Jacob knows,'' Paul Sebesta said. ``He thinks it's normal.''
So normal that Jacob's favorite doll has fake scars on its chest that Jacob pretends to fix with his homemade doctor's kit.
But the real-life scars on Jacob and Kellsey can't be fixed easily or permanently, so their parents are left financially responsible for paying the big bills. Already Kellsey has had seven major surgeries and Jacob has had four. And common items like car seats also cost these families more than typical families.
Beth Toone, a senior trainer for the Exceptional Family Member program, said that a special seat for a disabled child can cost as much as $500. A typical seat for a healthy child is about $50.
These families aren't always left on their own when it comes to footing the bills. They get help from TRICARE, a health care program that serves uniformed service members and their families.
However, exceptional families need more. The goals behind the Exceptional Family Member Program need to be extended, they say, because the program isn't designed to keep in touch with them once they've enrolled in the program. It doesn't provide them with support groups or respite care because its purpose is primarily to ensure that they don't get deployed somewhere they can't go.
``They did help us a lot by getting us into a house,'' Paul Sebesta said. ``But that was it. The program is just a check in a box, which is nobody's fault, because it's not set up to be a liaison.''
Other exceptional family members agree.
``All we get from the Navy are pamphlets,'' Tammy Sebesta said, ``but what we need are other resources, like baby sitters.''
Cole agrees.
``I'm not the expert,'' he said to potential participants. ``What I'm trying to do is motivate you and plead with you to fix the problem. This is one of those Christian spiritual things - these families have happened to be blessed with a broken child, which is a lifetime commitment.''
Because it's a permanent commitment, the Navy must do what it can to help.
``We pride ourselves on our people,'' said Rear Adm. William Rowley at Portsmouth Naval Hospital. ``And they're only good if their families are good.''
Tammy Pauley isn't waiting on the Navy, though. With Tammy Sebesta's help, she's started a support group called We Care.
The group now comprises about 50 families, and it caters to the needs that haven't been met by the Navy's family program. The group offers kids cooking classes, CPR certification and stress management techniques.
``We needed this kind of help when we moved out here,'' Tammy Sebesta said. ``But I didn't know anybody, and most people didn't have these problems. Now we want to help out other people like us.''
The Exceptional Family Member Program has supported the We Care group by distributing fliers, which the Pauleys and Sebestas used to do on their own by counting wheelchair ramps at the bases' houses.
``They're doing more than they've ever done before,'' Tammy Sebesta said.
But until they do even more, the Pauleys and Sebestas take one day at a time.
``Jacob is walking now,'' Tammy Sebesta said. ``But it's been so long - in and out of wheelchairs, feeding through his nose. And we still have our every day problems to deal with: I find dinosaurs clogged up in the toilets, and Jacob's behaviors can go up and down. But I think we're actually kind of lucky: Some families lost their kids.'' ILLUSTRATION: Color photo
MARTIN SMITH-RODDEN/The Virginian-Pilot
Tammy Sebesta affectionately holds her son Jacob, 4, who has medical
problems. Paul Sebesta is at right.
Photo
MARTIN SMITH-RODDEN/The Virginian-Pilot
Kellsey, 5, the daughter of Tammy and Bryan Pauley, suffers from
quadriplegic cerebral palsy and requires constant care.
KEYWORDS: NAVY FAMILIES AID DISABILITIES by CNB