Alisa Svenson found out that she was pregnant when she was admitted to the hospital for a surgical procedure. Not only was she surprised to discover she was pregnant, she was doubly surprised to hear she was expecting twins!
On June 10, 2005, the Svenson family (dad Bert, sister Jenna and stepsister Kelsey), of North Royalton celebrated the arrival of Sara and Brock. Although Sara’s newborn test results were normal, some of Brock’s were not: He had Down syndrome, and something even more worrisome. His heart was functioning as one large chamber, instead of four. Oxygen-rich and oxygen-depleted blood was pooling together. “We were overwhelmed hearing the diagnosis and words we had never heard before and didn’t understand,” says Alisa.
For the next several months, they spent countless hours researching Brock’s condition, meeting with specialists, dealing physically and emotionally with the ups and downs of their son’s medical condition, and learning to care for him at home. It was a very hard time for the family.
Jenna — who was used to being the only child — wasn’t getting any attention, and there was no time for bonding with Sara.
“Well-meaning people told us, ‘Don’t worry, everything will be OK,’ but in reality everything wasn’t OK,” says Alisa. “Our child was very sick.” Before age 2, Brock underwent five open-heart surgeries, five heart catheterizations and one gastrointestinal surgery. During this time, the family spent several nights at the Ronald McDonald House of Cleveland.
The Svensons also faced the daunting tasks of finding programs and services to help their son and funding streams to help pay for them. Navigating the world of disability programs and services isn’t easy. There’s no single point of entry into a system of care or one organization that does it all. Illnesses or disabilities such as cerebral palsy, autism, cystic fibrosis, juvenile diabetes and Down syndrome are long-lasting and cannot be cured, but must be managed. Most children require multiple care providers.
Each service provider has specific eligibility criteria that determine the availability of funding and services. Lack of communication and coordination among different providers, high caseloads and staff turnover can add to the confusion.
“We experienced many disconnects, and found out soon that no one would care or advocate for Brock as much as we would,” says Alisa.
Tools for Today and Tomorrow streamlines the process by offering information in one place. Visitors to the Web site (www.toolsfortoday.org) are directed to pages that have links to various local and state agencies, support-group Web sites and event calendars. Professionals have links to resources and publications that can help them connect with families in need of specific services.
“The Tools Web site ... centralizes a lot of useful information,” says Alisa. “It’s eye-opening to see who and what is out there to help. And it’s convenient. Because the Web site is available 24/7, I can choose to use it when I want to.”
In late 2003, Professor Emeritus of Pediatrics at the Case School of Medicine Carl Doerschuk, M.D., fellow Ronald McDonald House trustee Michael Clegg (a founder of the Ronald McDonald House of Cleveland) and Executive Director Craig Wilson met with community leaders from local hospitals, universities and social service organizations to discuss the challenges families face and how to help. This group, acting as a steering committee, also held focus groups at which parents were asked about their experiences and what they needed help with most.
“Too often, families are told to live day-to-day,” says Dr. Doerschuk. “Many children today are living longer, and we need to help families plan for the future.”
No. 1 on the families’ list was the need to know about community resources, programs and services.
“We see more than 1,400 families a year at the Ronald McDonald House of Cleveland,” says RMH Day Manager Joanmarie Button. “While they are at the hospital and here, they are in contact daily with professionals and other families in a supportive environment. But when they leave, those supports are no longer there. Many of the families, especially those newly diagnosed, describe a sense of feeling lost ... of not knowing what they need help with, what questions to ask or what lies in store for the journey ahead.”
In response to these needs, the committee held conferences in Cleveland in 2004 and 2005. Experts in the fields of medicine, education, law, finance, psychology, social work and religion addressed topics including medical and educational advocacy, family issues and financial issues and legalities. More than 500 parents and professionals attended the conferences.
The success of the conferences prompted an expansion of the program in 2006 to include quarterly workshops, a Web site and a full-time program manager, Linda Kresnye.
Last August, the Tools program won a “Best Bets” award at the 2007 Ronald McDonald House Charities (RMHC®) International Conference in Chicago. All 270 Houses globally were eligible to receive this worldwide recognition. The award acknowledges the mission and work of this collaborative effort.
Tools workshops and conferences provide opportunities for families to meet with experts and those in similar situations to become better informed about advocacy, family, financial and legal issues.
In addition to the 22 current partner organizations, additional program support is provided by The Cleveland Foundation, The Leonard Krieger Fund of the Cleveland Foundation and the Children’s Family Care Foundation (Akron).
The online calendar lists workshops on topics such as dealing with aspects of a specific condition — such as autism —financial planning, and Sibshops, where siblings can gain a better understanding of their special-needs brother or sister in a fun, age-appropriate setting.
With its three-pronged approach —Web site, workshops and conferences — Tools for Today and Tomorrow helps parents be a stronger voice for their children.