Not many parents allow their children to have snowball fights in the house.
But last winter, when her twin 10-year-old girls couldn’t leave the warmth of their living room, Cheryl Carrier of Hallsville scooped buckets of snow and brought them inside to Chelsea and Lindsay.
At 18 months, the twins experienced frequent ear infections and head colds two weeks after receiving their DTP immunization. The colds progressed into week- and month-long hospital stays. The girls gradually developed a neurological disorder of unknown etiology.
“We basically don’t know what it is,” Carrier said. “It’s some kind of neuromuscular disorder.”
Chelsea and Lindsay are both deaf and use American Sign Language to communicate. Lindsay has no use of her left arm or legs and must constantly remain on a ventilator. Chelsea uses a ventilator when she sleeps.
As Chelsea and Lindsay grow up, the Carrier family must make expensive modifications to their home and transportation. With financial assistance from Boone County Group Homes and Family Support, the Carriers are building a 500-square-foot addition to their home.
The group was formed to help individuals and families deal with the everyday challenges of developmental disabilities. This type of disability occurs before a person reaches the age of 22 and results in difficulties in walking, talking, self-care, learning, working or living independently.
The program uses county tax revenue and other state and federal funds to provide financial assistance to its developmentally disabled clients in Boone County.
The group is providing a Medicaid waiver for the Carriers that will cover about 60 percent of the family’s $17,000 construction project. To keep costs down, Cheryl’s husband, Rodney, will complete most of the home addition himself.
The back wall of the house will be torn out to create access to a larger dining room where the family can eat together. The twins’ wheelchairs hold 65-pound ventilators and cannot fit around the dining room table.
The addition will also include a 14-foot-by-15-foot bedroom complete with wall shelving units, a walk-in closet with low racks so Chelsea and Lindsay can pick out their own clothes, and a bathroom with an elevated tub to make bath time easier. All-new doorways will be 36 inches wide to provide the girls wheelchair access to this part of the house.
The group has also assisted the Carriers with the purchase of a modified bike for Chelsea and Lindsay. The $3,000 tricycle is extra wide and can hold ventilators. With this modified equipment, the girls can ride around with other kids in the neighborhood, Cheryl Carrier said.
The twins enjoy bowling with the Special Olympics, bouncing on trampolines and petting farm animals brought into the Carrier living room by Cheryl Carrier’s relatives from northern Missouri. Both girls love painted nails and makeup. Last year, Chelsea even modeled with MU offensive lineman Rob Droege to promote the University of Missouri Health Care Children’s Hospital.
But these 10-year-olds also overcome astounding obstacles.
In early 1996, Lindsay developed pneumonia and was put on a ventilator. Two months later, Chelsea’s immune system failed and she was admitted to the hospital for 92 days.
“Our perfect lives were flipped upside-down into chaos,” Cheryl said.
For the next year, the twins battled respiratory syncytial virus and pneumonia on multiple occasions. The Carrier family moved to south Columbia from Lancaster to be closer to mid-Missouri hospitals. Then, in February 1997, Chelsea was placed in the intensive care unit, her body blue and swollen.
“We actually got the call to come to the hospital because she was going to die that day,” Carrier said. “It was so much worse than I even remember, but I guess you kind of block it out. What these girls go through everyday is unreal.”
Today, Chelsea and Lindsay are in fourth grade at Hallsville Elementary School. One of the family’s six nurses always attends class with them.
“We were scared to death that the kids would make fun of them, but they viciously stick up for them,” Cheryl said.
“The kids fight over who gets to sit by the girls at school,” said Tom Andert, an Integrity Health Care nurse who works for the Carriers.
Chelsea and Lindsay have not been in the hospital for two and a half years and are doing well.
Boone County Group Homes and Family Support is an entity created by statute that serves residents of Boone County. It has a nine-member board of directors appointed by the Boone County Commission.
The organization applies for city funding through two programs: Community Development Block Grants and Home. These programs are administered by the city and funded by the Department of Housing and Urban Development. Last year, the city spent $690,000 on the Home program and $1,010,000 on Community Development Block Grants.
In July, the program received a $75,000 grant from Columbia to make individual home modifications to client homes and apartments within the city limit, said Jan Kruse, assistant to the Boone County Group Homes and Family Support executive director.
“The Home program is used for housing rehabilitation, homeownership assistance, tenant-based rental assistance and rental housing production,” said Tom Lata, community development coordinator for the Columbia Planning and Development Department. “It targets low-income people.”
Boone County Group Homes and Family Support received $64,787 in 2002 to renovate an eight-plex in southwest Columbia that houses agency clients. After completing these modifications, they received another $100,000 in Home program funding in 2003 to improve and modify additional apartments. This construction is still underway.
The organization is currently using community development block grants totaling $40,000 to make individual home modifications and repairs. Next year, Boone County Group Homes and Family Support will receive another $25,000 block grant for the project, as well as the $75,000 Home program grant approved by the Columbia City Council in July.
In addition to financial assistance, Boone County Group Homes and Family Support offers services such as respite care, transportation and a number of therapies. Some of these services are contracted out by the group to other organizations and providers.
“Each person or family sits down with a caseworker to decide what should be done to improve life and functioning,” Kruse said.
Home repairs and modifications include anything from roof and plumbing work to wheel chair accessibility improvements.
“One of the difficulties of the program is looking for lead-based paint,” Kruse said. “If the house was built before 1978, the lead issue must be addressed and, if lead is found, could double the cost of modifying the home.”
Programs similar to the Boone County program helping the twins exist in about 80 of 114 Missouri counties, Kruse said.
It has 46 residents living in Columbia apartments, most of whom are older or just out of school. Others in the program live independently or with a family member or friend. Some have 24-hour protective oversight, or constant care, while others receive service as needed such as help with training for a job, packing a lunch or monitoring expenses.
With help from Boone County Group Homes and Family Support and programs like it, the Carrier family has learned to deal with the twins’ disorder.
“It’s an awesome organization; they’re extremely helpful,” Carrier said. “Our daily lives are much better off because of them.”