Why the long wait for behavioral and developmental evaluations?

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Imagine taking your 4-year-old daughter to the pediatrician for her well child visit, where you expect to hear the usual “she’s doing great – see you next year!” This time, though, your doctor is throwing out words such as “speech delay,” “unusual behavior” and “lack of eye contact.” Your doctor puts in a referral to developmental pediatrics, telling you to call if you don’t hear anything in the next two weeks.

Most parents are in panic mode at this point, seeking input from family and friends and frantically searching through symptoms and conditions on WebMD. The word “autism” keeps coming up. Two weeks following the day of the well child visit, you call the number you were given and you’re told to fill out some forms in order to be seen in the clinic. You fill out the forms, fax them and wait for your appointment to be scheduled.

A week or two later, you receive a letter explaining how you’ve been added to a waiting list for an evaluation. The approximate wait time is six to nine months – full-blown panic ensues.

These stories are all too common, as access to care is arguably the largest obstacle faced by patient families and developmental-behavioral health providers alike.

New figures from the Centers for Disease Control and Prevention suggest 1 in 59 children are diagnosed with autism spectrum disorder. According to the National Center for Learning Disabilities, as many as 1 in 5 children have learning and attention disorders.

Given this overwhelming prevalence, it’s no wonder why so many families face challenges when searching for treatment. There simply aren’t enough qualified providers to evaluate and treat all of the children and adolescents with developmental, behavioral and emotional disorders. Other factors might include lack of insurance coverage and high out-of-pocket costs, not to mention basic barriers such as limited transportation, busy schedules and so forth. For example, many treatment plans for children’s mental health or behavioral issues will involve a series of weekly therapy sessions. This might be challenging for families already attempting to balance multiple responsibilities at once.

Here at the Meyer Center for Developmental Pediatrics and Autism Center, we undoubtedly recognize and understand the anxiety and stress placed on caregivers who are trying to access developmental-behavioral health services for their children. Fortunately, there are people, places and resources available at your disposal. You can do a handful of things while waiting for your child to be evaluated, such as:

• Contact your child’s health insurance plan and ask to speak with a service or care coordinator or case manager. Let them know you’re having trouble finding or securing services – they might have additional suggestions on providers who are in-network with your plan.
• Reach out to agencies such as Mental Health America of Greater Houston or the United Way of Greater Houston (2-1-1) for information on local behavioral health providers.
• If your child is younger than 3 and you have concerns regarding his/her development, you can contact the Early Childhood Intervention (ECI) statewide program to request an in-home evaluation. Texas Health and Human Services provides more information on their site and can locate your local ECI program.
• If your child is older than 3, contact your local school district to request an evaluation for special education services. For more information on this process, check out Navigate Life Texas or Disability Rights Texas.
• Learn as much as you can while you’re waiting for an evaluation. Seek out local organizations that might offer helpful information and/or educational programs before your child even receives a diagnosis. A few of these organizations include:
  • The Arc of Greater Houston
  • Escape Family Resource Center
  • Family to Family Network
  • Families for Effective Autism Treatment (FEAT) – Houston
  • National Alliance on Mental Illness (NAMI) – Greater Houston

It’s equally important for caregivers to find ways to manage their own stress levels as they fight for their children. Even though long wait times and difficulty finding services are frustrating, we suggest finding a balance between persistence and patience. You’re on the right track – seeking help for your child and doing what you can while you wait.