P is for Perseverence, V is for Victory, C is for Choice.

The IEP meeting- September 22, 2009.
Standing room only, 8 representatives from RCS (her current school), and one representative each from both Wachusett and Fitchburg Special Ed departments. My rejected IEP letter sat atop a pile of business to attend to as well as the development of the new IEP, and discussion of the acceptance to the May Institute from last week. The meeting was the most productive one in 10 years, and it ran over 2 hours in length. The conclusion of which is that FINALLY (after 9 months of aggressively fighting for home support services which are adequate to make a difference) the two school districts whose budget Kearney's education is supported by, have both agreed to stop making excuses, and give her what she needs. For several years we have been requesting extended school hours/ afterschool programming and have been told that the services simply did not exist. Then when Kearney started at RCS and I found out that RCS has a home consulting division, and the "unavailable" excuse was no longer acceptable, I again requested home support. This was in January of '09. After another month or so, Wachusett agreed to pay for 3 hours per month of "home consultation". Ridiculously inadequate. We were continually told that extended services would have to come from DMR. RCS and I both continued to advocate for more hours including direct services in the home (not just consultation with us). Wachusett continued to reject this and Fitchburg was not even attending the meetings at this point. Wachusett did hire a consultant to come into our homes
‘to better assess the level of her needs”. I speak about this extensively in the first several entries into this blog. This is when the recommendation for residential placement was first suggested.
This is when I began to scream about the unfairness of not providing her with any extended support services which would give her the opportunity to live successfully at home. Her right to the least restrictive environment was being trampled.

We went back to the table for another IEP meeting in July, additionally armed with my hired consultant’s recommendations for 10 hours/week of direct services in addition to 4-5 hours/month of consultation. This time Fitchburg showed up at the meeting. Wachusett balked at the need for that amount of hours but was still in favor of residential school. We left that meeting with the district reluctantly agreeing to 4 hrs/week of direct and 2 hours/month of consultation. This led to the rejected IEP and nearly 2 more months of waiting to resolve the matter. In the mean time the invitation to bring Kearney to the May Center came, and the shocking letter of acceptance the following day.

During this IEP meeting, Fitchburg’s representative quoted my own words and said “It doesn’t make sense for a child to go into a residential placement if we haven’t done everything possible to allow her to stay in her home community.” She further questioned “why was only four hours agreed upon at the last meeting?” And I should have stated “why weren’t you there at the last meeting (one of her colleagues had filled in for her). By the end of this meeting the “team” had agreed on 8 hours/week of direct services and 3 hours/month of consultation. They had also unanimously agreed to provide a bus monitor for her (another story for another time).

Talk about frustrating. While this was certainly a victory, the timing was exceedingly frustrating. We talked openly about this recent residential option and I expressed my uncertainty about which route would be the best option to meet Kearney’s needs. The fear of declining a hard to find residential opening and then not having this option at a later date has made this decision making process very stressful. I was honest about the fact that I still wanted to gather more information about the May center including doing some observation of the actual “home” that Kearney would be placed in. I expressed my concern that I feared the home services would be difficult to implement in two homes, and that Kearney’s Dad has not been actively engaged in her programming which would be a problem. We discussed how in home programming, much of the work falls on the parents to implement, even with direct service hours, there are still far more hours in which the parents are the ones providing the “direct service”. Certainly residential school would be the “easier” option for us, but whether it would be the “best” option for us/her was the very difficult question we were trying to answer.

So, in the end, after all of the stupid BS they put me through, hiring expensive consultants, rejecting IEPs, calling the board of Special Ed appeals,it seems that the previously unavailable home services, which then became available but were deemed as excessive and unjustified, are now miraculously acknowledged as both AVAILABLE and JUSTIFIED!

A big decision would need to be made but the reality was that FINALLY, one way or the other Kearney's education and life was going to improve! Perseverance has delivered a hard fought victory to be savored. We now had a choice to make between two viable options. It will be the most difficult decision to make but choice equals empowerment, and that is a really good thing.

Next blog will be all about the choice...