Almost Home Kids—Sharing the Care for the Area’s Medically Fragile Children

July 2014 View more

DeborahGrisko_800wWhen children with complicated healthcare needs are discharged from the hospital, their families may not be prepared to care for them on their own. There is medical equipment to master, nursing services to hire, and benefits to navigate. That, coupled with the constant care a medically fragile child requires, can leave families feeling overwhelmed and underprepared. Fortunately, Almost Home Kids (AHK), a Naperville-based nonprofit, provides a home-like setting where families can successfully transition their child’s care from the hospital to the home.

Medically Fragile

Children deemed “medically fragile” are stable enough to leave the hospital, but still need life-sustaining treatment, equipment, and assistance with daily activities. “By offering both transitional and respite care, we provide two very unique and important services to families in the community,” says Deborah Grisko, AHK president and executive director.

The concept for AHK began in 1992 when two mothers faced the challenge of caring for their own children with special medical needs. In 1999, the organization received a HUD grant and began offering onsite respite care at its current Naperville facility. “Almost Home Kids is unique to Illinois,” Grisko explains. “No other state has a community-based health care center like ours.”

Transitional Care Program

“We added transitional care to our services during the 2004 nursing shortage,” said Grisko. “Assisting families with their transition from the hospital to their home is a big part of our focus today.” During their 120-day stay, children receive 24-hour care from pediatric nurses, while their families are trained how to use home medical equipment and care for their children’s special needs. The staff also accompanies families on medical appointments and helps them navigate the Medicaid system.

Respite Care Services

Under the respite care program, children are able stay at AHK for up to two weeks a year, while their families tend to other things, or simply benefit from a much needed break. “I know parents who hadn’t gone out to dinner for 10 years until they learned about our services,” Grisko explains.

“Our dedicated staff provides good old-fashioned bedside nursing,” says Grisko. “We spoil the kids with all the activity here. It’s almost like a vacation for them when they stay with us.” AHK also provides round trip transportation for children and their equipment. Because three-fourths of the families AHK serves live at or below the poverty level, and respite care is not covered by Medicaid, most of the organization’s fundraising efforts are focused on the respite care program. “We never want to turn anyone away,” Grisko says.

Expanding AHK’s Care

Grisko began working for AHK in 2007. As a mother of five children and a nurse, she was immediately drawn to the groups’ mission. “I firmly believe that every child deserves to grow up in a home instead of an institution or a hospital.”

When Grisko was hired, AHK only had its Naperville location. “There were over 12,000 medically fragile children in the Medicaid system and we only had 12 beds.” Under her leadership, AHK opened its second facility in the Ronald McDonald House near Lurie’s Children’s Hospital in 2012.

AHK’s benefits are far reaching. “It’s a tremendous cost savings to the State of Illinois when a child stays with us versus remaining in the hospital,” said Grisko. “Our services save the State of Illinois over $22 million annually.”

Grisko’s passion for her work is evident. “Our services help the family unit remain healthy. I get the greatest satisfaction seeing a family going home to be a family. They leave here empowered and ready to celebrate their lives.”

For more info,