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Read this report of inspiring stories from Phase One of the Be Our Voice project.

Improvement Gets Personal:
Parent Involvement

A Message from Meghan A. Guinnee, PhD
NICHQ Project Director

January 2012

When my husband and I brought three foster children into our home six years ago, I was nervous that caring for three children at once would be too much to handle. I prepared myself for the chaos and hard work of the day-to-day responsibilities of taking care of three boisterous little girls—and it was a lot of hard work and a lot of chaos—but I wasn’t prepared for what turned out to be the hardest part: navigating the various systems these children were a part of.

Navigating the foster care system and Medicaid was difficult enough. I then learned that two of our children would require Early Intervention services. I was told they needed speech therapy—I vaguely understood what this was—and 6:1:1 inclusive therapeutic preschool—I had no idea what that was (I later learned that it refers to the ratio of six students per one teacher and one aid in a classroom setting). This is when I started to feel helpless.

I have a PhD and I’m used to feeling intelligent and capable. But I have never felt less intelligent or less capable than when I was trying to navigate the various systems in which my children were involved. Worse, I didn’t know where to look for information. I was used to being able to research a problem and find a solution, and here I was with the future of these children depending on my ability to advocate for them, and I did not know where to turn.

There is nothing more frustrating for a parent than knowing your child needs something, but not knowing how to get it. More than once, I was reduced to tears.

There was a bright side, however, that made the tears worth it: although navigating the system was difficult, the services themselves were amazing. I have no doubt that the services that my children received through Early Intervention changed their lives.

And the lessons I learned from this experience changed my life too—at least the direction of my professional life. I’m now privileged to work with NICHQ on projects to improve the systems responsible for the delivery of children’s healthcare.

One of the initiatives I work on with NICHQ is Improving Hearing Screening & Intervention Systems (IHSIS), for which I serve as project director. NICHQ has partnered with the Health Resources and Service Administration’s Maternal and Child Health Bureau (MCHB) to engage all states, the District of Columbia, and Puerto Rico in a collaborative to enhance the performance of Early Hearing Detection and Intervention.

Early identification of hearing loss and appropriate support is key to successful language and speech development—and success in school. Most US-born children are screened for hearing at birth in the hospital. Unfortunately, data from the Centers for Disease Control and Prevention (CDC) suggest that up to 60% of children who do not pass their initial hearing screen do not receive appropriate and timely follow-up for definitive diagnosis of hearing loss, and only 77% are receiving intervention by six months of age. The primary goal of the IHSIS project is to improve these numbers.

As I see it, one of the key components of the work of the IHSIS project is the opportunity to engage family partners in helping to improve parents’ ability to navigate systems. Working with Janet DesGeorges of Hands and Voices, who is a faculty member on the IHSIS project, I am thrilled to watch parents partner with their states to help empower other parents to take control of their journey and help improve the system of care for others to come. Great systems of care are great because they not only provide an excellent and necessary service, but also provide a clear and easy path to those who need the service.

Left to Right: Dasia, Delilah, Destiny

Left to Right: Dasia, Delilah, Destiny

As part of the IHSIS project, a number of states, working with their parent partners, have developed tools to help parents navigate systems, improve how information and test results are communicated to parents, provide family-to-family support, and much more. I know how valuable these efforts will be to thousands of parents entering the system that I now see from both perspectives—as a program director and as a parent.

Those three little girls are now our three adopted children. The services they received through Early Intervention made a real difference and they no longer need services. They are happy, healthy, and boisterous as ever, and I can’t even remember what my personal or professional life was like before them.


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