Finding reputable day care is one of a family’s most important decisions. For a family with children who have been diagnosed with hemophilia or von Willebrand disease, that decision can be even harder. Whether you are working and need a day care provider or your child is getting ready for preschool, there are numerous resources and steps you should take to choose the right person to care for your child.
Getting Started
Your neighborhood and community can often be the best place to start your search. Talk with other parents in the area about which day care providers they find useful; consult the social worker at your local hemophilia treatment center (HTC) and ask doctors, co-workers and friends for advice about which providers or schools to look at first.
“Do a little research,” says Danna Merritt, LMSW, of the Children’s Hospital of Michigan in Detroit. “Look at the area, go in and sit down with various day care providers and talk with them about the possibility of caring for a child with a bleeding disorder.
Talking with the day care provider or school can dispel many of the myths associated with your child’s bleeding disorder. If necessary, educate them about the disorder and its different levels of severity. Talk to them about clotting factor and how, when and where bleeds can occur.
[Steps for Living: Out-of-Home Child Care / Day Care]
Day care providers and schools should know how to recognize a bleed in a child as well as how to react in an emergency. This emergency plan and first-aid training can be crucial to the health and well-being of your child, explains Merritt. Caregivers should heed the warning signs of a possible bleed or injury in your child and know when the problem is serious enough to contact you immediately. Staff at the local HTC can arm these caregivers with specific information on how to manage a bleed, if needed.
Parents also may have to develop an Individualized Healthcare Plan (IHP), which provides information about what to do if your child has a bleed or injury. Be sure to include your name and contact information, as well as that of your child’s physician. Also include your child’s health history, what type of bleeding disorder he or she has, blood type and treatment. An emergency plan can be worked into an IHP outlining specific procedures for bleeding episodes and stating who should treat your child.
“It’s important to have these conversations and see what their willingness is to understand hemophilia,” says Leslie McGeady, MSW, LISW, of the Dayton Children’s Medical Center in Ohio. “If you get the sense that your child is not different, not important, then that should be a red flag.”
Private centers and caregivers can refuse to take in a child with hemophilia. That’s why it’s important for parents to know their Americans with Disabilities Act (ADA) rights, says McGeady. She also suggests that parents become familiar with the requirements of laws for state day care centers, such as the ratio of children to staff, how staff is trained and whether they have emergency medical training, and the protocol for handling an emergency. While public schools and day care centers have to abide by the federal ADA stipulations and state laws, private centers might not be as accommodating. For example, private day care centers might have different mandates for responding to an emergency and might not call parents immediately if a child has a bleed. In these situations, it’s the responsibility of the parent to inform their child’s caretaker how to react. “Don’t expect [the day care center] to know,” explains Merritt. “You might be the one to educate.”
Parents should also read, research and talk to others in their community to learn their options. “All parents need to empower themselves and do their research,” Merritt says.
[Steps for Living: Sample Letter for Day Care/Preschool (.pdf)]
Selecting a Provider
Once you have narrowed your search, it’s important to visit each place and personally interview the people who will be caring for your child. Leave enough time to walk around and observe the interactions between kids and providers, says Merritt.
“Go in and observe,” suggests Merritt. “See what the dynamics are like and if they are supervising the children well. Get to know the staff and ask them what they know about bleeding disorders, about caring for a child with one and how many kids they are caring for now.”
In general, Merritt advises that the ratio of children to teachers be 3 to 1 in day care and about 4–6 to 1 in preschool. “If it’s not that ratio, then keep shopping,” she says.
McGeady advises parents and family to look around and check the physical environment of the day care facility, asking themselves: Are wall outlets covered? Have they passed all of their state inspections? Are they licensed? Is it secure? What is your general comfort level?
By visiting regularly with the school or day care provider and by simply being aware of your child’s new surroundings, you will feel better about the overall decision to seek care for your child.
“Of course, we want [day care] providers to take an interest in every child, but there are some special circumstances for those with hemophilia that you just have to look into,” says McGeady.