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Parents with Medically Fragile Children Catch a Much Needed Break

Audio

Aired 4/19/09

Children who have cerebral palsy and other serious medical conditions often need constant care and supervision. That can be exhausting for their parents. A program in San Diego takes care of medically fragile kids on weekend so their parents can catch a break. It's the only program of its kind in California. KPBS Health Reporter Kenny Goldberg has the story.

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(Photo: Cody Joplin (L) and Together We Grow director Terry Racciato enjoy each other’s company. Kenny Goldberg/KPBS )

On a Friday afternoon, Linda Joplin wheels her son Cody into a non-descript building in Kearny Mesa.

 

Linda Joplin: You be a good boy. Don't cause any trouble, okay? Ha, ha. You never do, you're a good boy.

 

Cody has cerebral palsy and suffers from seizures. Joplin says caring for him is tough. 

 

Joplin: Well, you constantly havin' to worry if he's gonna develop a seizure that day. If he does, that's pretty draining for both himself and myself. Just doin' his everyday care as far as gettin' him up from bed, transferin' him to a wheelchair. He's over 110 pounds. Liftin' him. Deciding what he wants to eat, drink.

 

Cody spends every other weekend at this program called Together We Grow . And Joplin and her husband get some time to themselves.

 

Joplin: It's so nice that my husband and I can go out to perhaps maybe the beach where it's not wheelchair friendly. We can walk around in the sand. We can do restaurants and actually have a meal together without to stop to actually feed Cody. We've been married 23 years and we just value having a respite every other weekend.

 

Together We Grow operates as a daycare center during the week for both medically fragile and typical kids.

 

On the weekends, the program takes care of about 30 kids with special medical needs.

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(Photo: Kids and staff get ready to spend the weekend together. Kenny Goldberg/KPBS )

 

They range in ages from 2 to 21. Like Cody, all of them are medically fragile. Some are developmentally delayed, too.

 

The program is staffed primarily by nurses and nurses aids.

 

Debbie Safcik heads up the nursing team.

 

Debbie Safcik: It’s almost dinner time, so a lot of them will be getting tube feedings, and medications. We have some children who may need things like suctioning, we have children who have respiratory problems, so they have to have special treatments to their chests, to get them to be able to cough.

 

Once that's taken care of, the kids don't just sit around and watch TV.

 

Teacher Robin Lawshe says the weekends are pretty structured. 

 

Robin Lawshe : We do sensory activities, and we'll go outside, story time, art, different manipulatives, depending on their abilities. And we join the other group sometimes for group activities, the smaller group, and just try to keep it like a regular school day. But a little more relaxed, 'cause it's the weekend.

 

Terry Racciato is the founder and director of Together We Grow.

 

Racciato is a registered nurse.

 

She started taking care of medically fragile kids in their homes about 30 years ago.

 

Terry Racciato : We had kids who were isolated at home. We were doing their nursing care at home, but they really didn't get to interface with other kids. And we found that there were a lot of problems with parents who would get so beat down from responsibilities of caring for these children, that we had what we called social readmissions, that's when you go to the hospital because your parents can't cope anymore and they need to have a break and there's nowhere else to go.

 

In 1990, Racciato helped write the bill that requires the state to pay for pediatric day care for medically fragile kids.

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(Photo: Justin Juanengo is a frequent weekend guest. Kenny Goldberg/KPBS )

 

Today, Together We Grow is funded primarily by Medi-Cal. Racciato says the program doesn't cost parents a cent, and they get a lot out of it. And so do kids.

 

Racciato: It's amazing for them. They really look forward to it. We have one little girl who's really very low-functioning, and her mom swears that she can tell when she goes around the corner up the hill by the way the road bounces, and gets absolutely hysterical, 'cause she's gonna get to go to respite weekend.

 

Unfortunately, there are thousands of families in California who can't take advantage of this kind of care.

 

By some estimates, there are more than 100,000 medically fragile kids in the state.

 

Together We Grow is the only program in California that provides weekend care throughout the year.

 

Kenny Goldberg, KPBS News.

 

Michelle Juanengo:  All right, I'm gonna be back on Sunday, okay. All right, you be a good boy for me while I'm gone, all right? Can I have a kiss?

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