When IFSPs Start in the NICU

Written by Julie Higginbotham, Senior Case Coordinator, Mecklenburg County CDSA

September is Neonatal Intensive Care Awareness Month, or NICA for short.  When I look back over the NICU blogs that we’ve posted over the last 2 years, I realize how much I love the different perspectives you can take on these babies who are fighting a little harder when they make their entry to the world.  Take our post by Raizel Kahn as she talked about her 24-weeker triplets in From the NICU, to EI, and Beyond – how amazing is their story, and how great is it to see how well her babies are doing after they aged out of early intervention services?  Our Table Talk Wednesday event about The Tiniest of Them All was such a great opportunity to get some answers to questions related to referrals from the NICU, helping families balance everything they may have going on after discharge, and figuring out age-appropriate expectations for preemies.  Taking a look back at Rules to Engagement: Families in the NICU, Michelle Allen discussed her perspective and how she starts the relationship-building process so families can better understand what we’re there to do when their perspective may be a bit more delicate.

As a clinical supervisor, I spend a lot of time talking with folks about some of the specifics related to supporting families coming out of the NICU, so in honor of NICA Month, I thought I’d share a few tidbits that come to mind related to gathering information and developing that first Individualized Family Service Plan, or IFSP.  Here in Mecklenburg County, we’ve developed relationships with our two major hospital systems so they can make direct referrals to us for babies when they have a diagnosis that will establish their eligibility for NC Infant-Toddler Program services.  Because of this connection, we sometimes get to meet with families and develop IFSPs before the babies even go home.  Sounds great, right?  But how do we talk about all this when the baby is in the hospital or has just been discharged?  Here are a few things to consider…

Family and Child Assessments
Depending on when you meet with a family coming out of the NICU, you might want to think about the questions you’re going to ask about the family, routines, and the child’s development.

• Assessing the Family – This may be the easiest part of the initial process for families still in the hospital because their resources can be discussed outside of their routines and the baby’s development in some ways.  For example, you can find out who’s involved in their lives, whether they’ve been connected to a medical home or other specialists, and what kinds of activities that they see for themselves as a family down the line once they get to go home.  Remember to balance gathering information about what things look like now with how things could look different when they go home.  If the baby is already home, you can ask some questions about how these things are going to figure out if there are some general supports that you can discuss with the family.  Need a bit more context?  Revisit what happens if you’re Lost? Use an Ecomap!
• Assessing the Child – As you’re talking to families and gathering information about routines and how the child is doing in each one, first frame up the context so you all can get to those routines-based outcomes on the IFSP.  But how do we shift our questions to address the current situation if the baby is in the hospital or is brand-new home “without a routine?”  I put that in quotes because it’s helpful to think about routines that happen regularly, not so much at regular times.  For example, babies don’t have “mealtimes,” they have “feedings,” which they do all day, every day (and night!).  What does the family already know about how feedings are going, and what supports have they gotten so far in the hospital?  Think about bathing or diaper changing.  Sometimes, the baby hasn’t been ready for a bath, or the parents haven’t been able to see or participate in a diaper change event yet.  You’d be amazed, though, at just how much great information parents have already!  If we’re there to be planning with families, why not then address the fact that the child’s location is about to change (or has just changed), and help families talk about what they expect to happen next?  That leads into….

Developing the Rest of the IFSP
All of the information you’re gathering during those child and family assessments lays the groundwork for the rest of the family’s IFSP.  How does that process flow for the little ones who are coming from the NICU?  So glad you asked….. 🙂

• Writing Outcomes – Sometimes, there are specific priorities and concerns that fall into your lap as you’re gathering information, but sometimes, there just aren’t concerns.  Yep – I said that out loud.  But think about that word – “concerns.”  We don’t want to set up the expectation that parents have to be worried about something to be involved in Infant-Toddler Program services.  We also don’t want to imply that they should be worried or “concerned” about something.  So what do we do about that?  Spending time talking about next steps for the baby is a great way to get to outcomes because, after all, there’s always a next step, right?  People have often heard me say that, while newborns aren’t supposed to be sleeping through the night, it’s great when they do! This could be tied to generally supporting longer sleeping periods at night, longer alert times during the day so parents can enjoy engaging with their new babies, feeding routines/timing so the baby’s belly is fuller for longer and/or can wake on their own to feed….the list goes on and on!  Reflective questions are key here – being able to identify what “sleeping through the night” means to the family (4-5 hours, 12 at a time, parents waking feeling more rested, etc.) and identifying the barriers can help guide that outcome to the most functional place for the family.
• Discussing Supports and Services – All of the above conversations have to happen before we can land on this one.  After all, we can’t discuss who’s working with the family until we know what they’re working on and why.  Since services have to be discussed in the context of the outcomes that have been identified as priorities for the families, we may be balancing this conversation with the one hospitals are having related to home health services.  Hospitals certainly have a duty to make referrals for medically-necessary services at discharge, but how does that mesh with what we’re doing?  Well, for starters, we don’t have to talk about these as separate entities.  If there’s a routine that could use support from that particular discipline, talk about it.  If there’s a more clinical need at the forefront, there may be some other priorities or concerns you discover from a more detailed discussion about that need and how it might affect a routine that has or hasn’t come up yet.  That doesn’t mean that we have to find a place to put a clinical support, but it does mean that we should be looking at each family’s individual needs and assessing how we can best support them as they continue their journey at home.

Here’s the thing about working with families coming out of the NICU – there are more similarities than differences when you’re thinking about this process compared to getting a referral for a little one who’s not talking as much as we would like.  Yes, there are medical things to consider, and yes, you have to be prepared to think about how you’re gathering information.  I get that.  But at the same time, you’re getting the opportunity to support a child and family through a unique experience, and I always feel like I learn more from families than they learn from me (if I’m doing it right).  You don’t have to know it all, and if you use the tools you have regarding reflective questions and coaching interactions, you’re still highlighting the family’s strengths, just like you are with any other family you serve.