For the most part, I got a better handle on the various terms ascribed to the different services and programs (ISFP, IEP, EEE, CSHN, xyzblahblahblah) and I think I know what happens next:
- In early summer, we will meet with the education coordinator again, get Hannah officially enrolled in the early ed program, and decide whether or not we want to send her to our county's special ed preschool;
- We'll also get Hannah an appointment to be seen by the physiatrist at the rehab clinic so that she is properly evaluated for and fitted with whatever equipment she needs (TrippTrapp chair, walker, orthodics if necessary);
- We'll find out what, if any, insurance coverage we will have for in-home PT/OT services.
But there are still facets of this system that are confusing to me. Which got me thinking: if this is still confusing to me, a fairly well-educated person with lots of resources available to me (financial and otherwise), what about someone less fortunate? Someone who has more pressing matters to deal with (putting food on the table, for example) that leave little time or mental energy to prepare for a two hour meeting with various service providers. What happens to those families and those kids? Do they fall through the cracks or does the system provide safety nets for just this sort of reason? And isn't the system supposed to be for exactly these families to begin with?
2 comments:
Not to mention how tough it is for people who are not native speakers. There is a role for social work involvement to act as an interlocuter between the provider team and the family. They are invaluable at places like Bellevue, and form part of the "interdisciplinary care team" at the hospital and in the various clinics.
But still you are correct in that there is no substitute for family-based patient advocacy (or patient based in the adult population). This is also true in the geriatric population.
You need a very intelligent advocate just to know what services are available, let alone avail the patient of them.
There was a great article written by a geriatrician MD on how he couldn't figure out which Medicare part D (drug benefit) plan to pick for his father...the various programs were too maze like to figure out. Imagine.
I completely agree, Krista! Each time I meet with the Early Intervention folks about my twins, I am reminded of how lucky I am to have the resources and information I have. I am a special educator, and have spent many years providing these services to families. I feel like I know exactly what questions to ask, and what requests to make in order to best advocate for my sons. Even with all of that information and experience, I am still sometimes confused and frustrated by the process. I can't imagine how parents with less information are supposed to ensure that their children receive all of the services and supports that they need.
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