Proactive has apparently been removed from the vocabulary of the majority of people that work with children that have complex medical needs. The systems are designed to be reactive rather than anticipating the obvious and getting a jump on the process to ensure little to no delay. It has been our experience the past few weeks that this is a concept people just do not understand and act as if I just created a new crazy formula for success. As frustrating as this can be at times, if there is one piece of advice we can share to other parents it would be to ALWAYS be proactive for your child. Be it for advocacy, services, appointments, or any other reason, you have to be the one to initiate and then push through to follow-up and ensure it is getting accomplished. Our most recent example of this was at our ISFP meeting last week. Our state gives every qualifying child in the early intervention program 6 hours per month for various therapy services needed. There is a process known as “review” where the team coordinator for a family can request additional hours with justification for adding new members to the team or expanding the frequency which the existing therapist may visit. In our case we have four therapist; physical (PT), occupational (OT), developmental interventionalist (DI) & Speech. Each session typically is 1 hour. Obviously, with 4 therapist that does not work well to divide up 6 hours, once a month is too infrequent, but it is not common to have that many services at once. We have discussed in several meetings now that ideally Elias would benefit the most from 1 hour per week from PT, OT, & speech (total of 12 hours) and 1 hour bi-weekly from DI (add another 2 hours, total 14 hours). The program is a “coaching model.” This means that during the therapy parents are to learn what to work on with the child and continue the work until the next session. Our justification, which was praised and received with amazement from the team, is that for the first time in Elias life he has been on a steady improvement developmentally. This is the longest stretch without a hospitalization in his life and he is showing desire, determination, and motivation to work towards “catching up.” Stretching the therapy sessions to every two weeks creates two issues. First, Elias is accomplishing and meeting his goals at a very rapid rate. Once he accomplishes the goal we are essentially at a stalemate for moving forward, waiting for the next session. Likewise, if there is something Elias is having challenges with that same extended period does not offer the opportunity for the parents to learn alternate techniques to help Elias succeed. Elias’ OT perked up and jokingly stated that I should write Elias’ review request. The issue is not so much the review itself, that should be approved, but it takes time. As with most things with the state it can take 4-6 weeks or longer. My issue was that we spent 35 minutes discussing how to split up the 6 hours in the interim. Why were we having this discussion? We had just had a meeting one month prior and we brought this up stating that for the six month IFSP we wanted to shoot for the 14 hours we described above. They all agreed, but nothing was proactively done to prepare for that. So now we are limited in the services we can get until the review is passed. Elias is the one who loses here, the child, all because the program is reactive instead of thinking ahead.
Another issue we have had lately is with people that say they will call us or returning phone messages. Our Audiology appointment is a great example here. After the ABR we were told in the consult that our information would be passed on to the BAHA specializing audiologist and that she would be reviewing Elias results and contact us for a consult. After a week and still no contact I decided to call myself. The point of this contact directly was to get us in prior to our ENT ear specialist appointment coming up next week. From the ABR until then was nearly a month, so realistically possible. Well the soonest the could get us in was a week after the ENT. So because someone dropped the ball and did not follow-through with an expectation they created for us, we now have to pay the price. So again my advice and lesson learned is no longer wait for anyone to call you. Call the very next day yourself. If I would have done this we may have been able to get in prior to the ENT, but because I took someone’s word that they would actually do something the system failed. Ultimately, it boils down to work ethic and values neither of which seem to carry much weight anymore. There are a few dedicated individuals out there, but they get smoked over by the barrage of idiocy like the examples above. It is a shame and a pity. Some people will defend this as being over-worked and stretched too thin and I agree there is a ton of that throughout the services available. However, my response to that argument is do not set up and create an expectation that you can not realistically achieve, because again it is only hurting the child when this occurs. My success with business relationships has always come from motto, “under-promise, over-deliver, everytime.” If we could only apply that to the children that need us the most!