By Susan Cartland
On Tuesday, May 10, Lurie Children’s participated in two On the Table 2016 discussions. These discussions center on issues that don’t have an easy fix. One of the sessions the hospital hosted was a discussion with parents of medically-fragile children on child health policy. Below is one mom’s perspective.
When was the last time anyone had an inspiring conversation about special needs children in the context of public policy, healthcare, education and in community? Most discussions- whether they are with a parent, provider, administrator or otherwise- bemoan how these systems are insufficient for children with disabilities or mental health problems. The gist is, there’s never enough resources to go around.
However, I just participated in an “On the Table” luncheon, a forum facilitated by Becky Levin of Lurie Children’s, where parents and providers shared views on child health policy: what’s working, what’s not, and what we would like the future to look like for special needs children and (let’s face it) ourselves, the caretakers. It was a comfortable setting, with a willing group and committed facilitator. Any suggestion or thought was, true to the name, on the table. We even got to dream a bit!
Lurie Children’s has been an active part of our family since my son Ray was born, two months premature with a mild brain bleed. Our neurologist and pediatrician suggested that we watch and wait, which we did until six months later the classic symptoms of cerebral palsy (CP) emerged: fisting with his right hand, lopsided crawling, unable to sit straight or roll to his left. The formal diagnoses of CP came just before his first birthday, and the rest is history…or really the beginning of our journey, and the ongoing cycle of highs and lows with lots of plateaus in between. That is how I was invited to this special forum.
As you might expect here, there was an abundance of frustration with insurance companies, navigating the education system and the lack of community family support. While this was a group who persevered to find adequate resources for their children, we all agreed it could be easier, especially for children on Medicaid or in low income households.
My son can attend therapy appointments every week, because my boss is willing to look the other way when I come in late or leave early from work. How can we help parents who work on the clock, and lose several hours of wages for every appointment…or skip appointments, because they can’t afford to lose those wages? Could policy help level the playing field?
We all agreed that it would be great to have service coordinators that extended beyond Early Intervention (EI). Once a child turns 3, parents themselves become the coordinators, having to synthesize a barrage of information from a range of well-intended, sometimes inconsistent, providers. Even in early adulthood, a service coordinator could assist parents as their kids transition to more independent living. It’s so hard to understand what is available between healthcare, schools and community support. Furthermore, could Lurie Children’s post these resources on its site? It’d be great to have simpler way to find information.
It’s hard to access mental healthcare and evaluations, which is mystifying to parents of children who suffer in this area. Why is it different from any other medical concern? How can we improve awareness and coverage?
Regarding community support, it would be great to bring parents out of isolation and into groups. There is no reason to walk these paths alone. How can we foster networks? And could we show some love for special needs children by creating a buddy system within the community? Could an older child, able-bodied or not, be a big brother or sister to a child with special needs? One of the largest concerns of any parent is, will my child be loved and accepted for who they are, exactly as they are? What else can we do to foster positive relationships in the larger community?
Well, those are my take-aways from our invigorating discussion. There are more questions than answers, but the questions can point us in the right direction. I’m grateful to have been part of “On the Table.”