Advocating for the Appropriate Level of Care
Parenting with hope through the hard places by Jennifer Griffis.
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I drove 70 miles to attend this meeting in person. My husband adjusted his work schedule so he could call into the meeting, and my mother-in-law was in the waiting room of the office entertaining a couple of our other kiddos who had traveled with me.
We’d been given the impression that today’s treatment team meeting was simply a formality, the final step in approving funding for services which other professionals had already determined our daughter needed. But as the chairs around the table began to fill with clinicians and administrators I began to feel uncomfortable…and outnumbered.
“We’ve reviewed the request for residential care and it doesn’t meet our qualifications for least restrictive environment. We have to see how your daughter does in a lower level placement first. We can offer you a therapeutic foster placement, but not residential.”
I sat there in stunned silence. This was not what I’d expected. Our clinician had been so supportive. She knew our story, our parenting, our family. She’d read the reports from the professionals and knew the recommendations. I didn’t understand what was happening.
I heard my husband’s voice over the phone speaker as he asked the first question. As I tried to focus on his words I found myself desperately wishing we were in the same room for this meeting. I quickly followed-up with a few other questions of my own. What about her need for a high-level of supervision? How was therapeutic foster care environment going to be different from what we were already providing at home? Was there anything we could do to help them reconsider the decision? The answers made it clear the decision was final. We could accept that service or our case would be closed.
I’m not sure at what point I started crying. As the meeting concluded I was left sitting with our clinician, tears streaming down my face. I pulled myself together, gathered up my kids from the waiting room, hugged my mother-in-law goodbye, and called my husband from the parking lot.
“This isn’t about our parenting or her needs. It’s about the system and how they function. We have to play their game. And if we do maybe eventually we’ll get to the place where we can access the services she actually needs.” He was right, accepting this service was really our only option. But it felt so unfair. Not just to us, but to our daughter. I headed home, tears stinging my eyes most of the drive.
Six months later, after a failed therapeutic foster placement, we sat in an intake meeting for the residential treatment program that her treatment providers had initially recommended. We never stopped advocating the entire six months, and finally, after the safety of other children had been put at risk, the system listened.
While most children and youth with serious emotional and behavioral challenges aren’t likely to “outgrown” all of those challenges, there will likely be years when they need fewer services. And there will also be times when they need additional services. Here are a few challenges parents may experience when advocating for the right level of services:
Parent and youth voice don’t seem to influence treatment planning. Sometimes it feels like decisions have already been made before a conversation occurs. Or maybe parents and youth are invited to share their perspective, but the voice of the system carries more weight in the final decision. Although an appeal or complaint process may exist, those procedures often feel challenging for parents to navigate.
System priorities are used as an excuse for not providing services. For example, principles of care such as “community-based services” and “least restrictive environment” are difficult to meet when there are barriers to accessing services. If a service isn’t available in a child’s community the family may request to access a higher level of care or travel outside of their community for treatment.
Many children’s mental health systems have become “fail first” systems. In order for children and youth to access a higher level of support in these systems, they must first “fail” at each prior level, even if medical necessity has determined a higher level is needed. This can delay much needed treatment and create additional trauma for the child and family.
In order to support parents and youth, a system of care should have a fully developed and accessible spectrum of services. Additionally procedures should be established to allow for ease of movement along that spectrum as a child matures and family needs change.
If you’re a parent in a system that is transitioning or isn’t yet child-centered there are some questions you can ask to help the system work in a more supportive manner.
- Is this the right service for my child based on their needs and strengths or is it simply the only service that’s available? Asking this question helps the system identify gaps in services as it creates a more complete spectrum of services.
- Are there other ways we can access a needed level of service that may not be currently available? Utilizing technology resources or paying transportation costs for therapists or families may increase accessibility to a service. While it is important to maintain fidelity with evidence-based treatments, there are still creative ways to meet needs.
- *These are the needs and strengths of my child. How can we address these in the treatment plan? Even in a system that doesn’t utilize the CANS (Child and Adolescent Needs and Strengths) or a similar communication tool, parents can develop a list of their child’s strengths and needs to help guide the treatment planning conversation.
Advocating for the appropriate level of care is one of the most challenging tasks for parents navigating children’s mental health systems. When systems develop the full spectrum of mental health services and create procedures focused on meeting the needs of the youth, advocating for services becomes less of a battle and more of a journey.