Collaboration between families and health providers can make caregiving easier, reduce stress, and result in better outcomes for your child with special needs. I learned this when my daughter Stephanie was a baby with kidney disease and ironically my husband worked for the urology division of a healthcare organization. He then had access to medical databases (now available publicly) on all the latest research which we could forward to Children’s Hospital. I was fortuitously also a special ed. major and took American Sign Language which we ended up using years later when our daughter was nonverbal due to her secondary diagnosis of autism.
So maybe your situation isn’t as coincidental. But there are things all caregivers can do for their children with special needs to make things easier and better. I found out when my daughter was in early intervention that we could reinforce what the therapists were doing with our child. Otherwise it’s like someone going to the gym only once a week and expecting to get into shape. We started by asking the physical, occupational, and speech therapists for “homework” that we could do with the baby during the week. They also helped with feeding/choking/swallowing problems. We worked on gross motor (large muscles like jumping), fine motor (smaller muscles like holding a spoon), and Total Communication (speaking and signing simultaneously - Stephanie is now verbal). You can also get developmental or educational toys; some places have toy “libraries” (see www.lekotek.org) and Toys R Us has a guide for differently-abled kids.
We made sure that her pediatrician was up-to-date on her specialty care. Every time we went to Children’s Hospital (in the early days it was once a week), he received a report and still does to this day. After years of going every 3 months, we’re back to monthly or biweekly depending on her labs as she’s currently on the transplant list. She has had a multitude of specialists at Children’s: nephrologist, surgeon, transplant coordinator, urologist, geneticist, nutritionist, orthopedist, cardiologist, hematologist, neurologist, developmental pediatrician, social worker, Child Life, etc. Her pediatrician is her “primary care physician” (PCP) which means he has the whole picture of what’s going on with her healthwise, including her regular childhood illnesses like colds and wellcare like immunizations. He helps us with “coordination of care” in keeping with the concept of the “medical home” developed by the American Academy of Pediatrics (AAP).
The medical home isn’t a place, it’s an idea. It’s that there’s one main person (or practice) that makes sure care is coordinated for your child. This helps save time by combining visits especially if it’s specialty care far away. It saves money and extra stress on families. It also stops duplicative tests-for example if your child is getting labwork for two different departments, they only get one needle. Or if they need bloodwork for a condition, why not check if they’ve had a lead screening. Or if your PCP is following up on a condition like scoliosis, why not get immunizations on the same visit. Some hospitals even have “complex care scheduling” if there are multiple specialists.
Some ways you can work with medical providers is to have your documents such as test results, medications, etc. ready. The American Academy of Pediatrics has a medical home website which also has a Build Your Own Care notebook. We make sure we check prescriptions and dates for the next appointment at each visit. It is helpful to write down questions prior to your visit. Find out ahead of time if the practice has after hours care or someone on call. Make sure you use urgent care for time sensitive issues that can’t wait and use regular office hours for routine care. By working together with your child’s therapists, doctors, and other health professionals, your child will truly have a team working to reach their best potential and you’ll know you’ve done your best as a family caregiver.
Every Child Deserves a Medical Home
AAP Medical Home/ Build Your Own Care
Working with Providers (Medicaid factsheet but good for other healthcare too)