I've had time to think and reflect about the process for my son to receive long term care and I realized that the entire process and even the day of the interview was upsetting to me. Aside from the stress it caused, I felt like I was on the verge of tears or on the verge of having a nervous break down every time I thought, mentioned, or discussed the process with anyone. During the process itself, I believed it was just because I was so stressed and scared about my son not continuing to receive the therapies he was received but looking back I realized it was more than that.
As a parent one of the joys we have is sharing with other about the accomplishments of our children. We boast about how well they are doing in school, how they are excelling at sports or other extracurricular activities. Our Facebook pages include pictures and video clips of all the wonderful things are children are doing and rightly so. We as parents are proud of all the things they can do - from the first time they roll over or sit up or take their first step, its all captured on video and proudly displayed to all.
The long term care interview is exactly the opposite. Instead of focusing on my son's accomplishments, I was asked to highlight all the things he could not do that other children his age could. I was asked to point out and identify how and where he lagged behind in milestones. As a mom, this is simply heartbreaking. I have and had been striving for the past 3 years to focus on what my son could do and what he had accomplished, not what he didn't. Isn't that the point of his having the various therapies - so that he can get all the help he needs to do the best he can to keep up with other little boys and girls his age?
Just as I did for my daughter, I cheered and marveled as he learned to roll over from his tummy to his back, as he learned to crawl and take his first steps. Sure, he may have done it several months or more later than when his sister learned to crawl or took her first steps but it was wonderful to experience just the same and no less exciting. But the long term care questions did not relish the fact that my son could do all these things, instead it was more of a penalty that he was not so far behind his peers!
So, I prayed and hoped that my son would have a bad day on the day of the interview and asked my friends and family to do the same. Because if he had a bad day, then the interviewer would not see what my son could do when he set his mind to something but rather someone else. I remember thinking was I a bad mother to be hoping for a bad day for my son? But, I honestly did not want my son to decide that day to show off and all of a sudden jump with his feet off the ground or walk a straight line because the interviewer would never believe that he really truly could not do that and this was his first time and they just might make the difference in whether or not he qualified for long term care.
Really, a mom or parent/guardian should never have to be in this position but because of the way they determine the qualifications for long term care we had no choice. I needed to present the best picture of a reverse resume of my son's abilities to the interviewer. Despite my normal inclinations or tendencies I had to remember to hold back on sharing what my son had already accomplished and what he was working on so there was no misinterpretation. It's a process that I did not enjoy and thankfully won't have to repeat for a couple of years.
Friday, May 18, 2012
Saturday, May 12, 2012
Long term care - the interview
A week after my son's third birthday, the day arrived for his long term care interview. I didn't sleep much the night before and was nervous to say the least. This was an important day for all of us and would decide how our next year of therapy played out for my son.
The questions posed by the interviewer were nothing out of the ordinary. The questions focused on whether or not my son had mastered various milestones for each age group (3 months, 6 months, 9 months, 1 year, 2 year, etc). What was interesting was the fact that the questions (newly distributed that year according to the interviewer) focused mainly on his physical development. Yes, my son's ability to roll, crawl, walk, pick up a block, properly hold a crayon are all important in determining his need for future therapy but, in my opinion, just as important was and is his ability to express himself and his needs and desires. Yet, there was only maybe one or two questions related to how he communicated with us or others. Apparently, all the experts decided that the communication/expression aspect of a child merited little regard with respect to development.
Well, despite my opinions - which I did express, the interviewer couldn't do anything except go through the questions she had. I answered them to the best of my abilities, keeping in mind that unless he had mastered a particular skill (i.e. he was doing it all the time with no problems) my answer to each question of whether or not he could do something was to be no. I think this caused my interviewer to raise her eyebrows a couple of time when I answered no at the beginning of the questioning but so be it.
I managed to make it through the 45 minute or so interview without bursting into tears (although, I came close once) and all we had to do after she was gone was wait for her to enter the scores into the system back at her office and let us know whether or not he qualified. The wait was excruciating but thankfully not long. We found out by the end of the week that our son had qualified for long term care, barely - like literally within a couple of points but he qualified. It was such a huge sigh of relief and then I did shed tears.
Thereafter, the transition was pretty easy. We were assigned a new support coordinator and the therapies continued as normal. At my first meeting with the new support coordinator she informed me that aside from the therapies my son was already receiving, we were now eligible for respite and habilitation. I did not know what either of those services were but I learned that respite meant that someone would come in and watch my son and give me a break. Woo hoo! Habilitation meant that someone would come to our home and also work with my son on daily routine stuff. I have not had a chance to start either service yet but am looking forward to it. We were also given supplemental/secondary insurance. This was something new because we did not have any additional insurance under the state plan.
The questions posed by the interviewer were nothing out of the ordinary. The questions focused on whether or not my son had mastered various milestones for each age group (3 months, 6 months, 9 months, 1 year, 2 year, etc). What was interesting was the fact that the questions (newly distributed that year according to the interviewer) focused mainly on his physical development. Yes, my son's ability to roll, crawl, walk, pick up a block, properly hold a crayon are all important in determining his need for future therapy but, in my opinion, just as important was and is his ability to express himself and his needs and desires. Yet, there was only maybe one or two questions related to how he communicated with us or others. Apparently, all the experts decided that the communication/expression aspect of a child merited little regard with respect to development.
Well, despite my opinions - which I did express, the interviewer couldn't do anything except go through the questions she had. I answered them to the best of my abilities, keeping in mind that unless he had mastered a particular skill (i.e. he was doing it all the time with no problems) my answer to each question of whether or not he could do something was to be no. I think this caused my interviewer to raise her eyebrows a couple of time when I answered no at the beginning of the questioning but so be it.
I managed to make it through the 45 minute or so interview without bursting into tears (although, I came close once) and all we had to do after she was gone was wait for her to enter the scores into the system back at her office and let us know whether or not he qualified. The wait was excruciating but thankfully not long. We found out by the end of the week that our son had qualified for long term care, barely - like literally within a couple of points but he qualified. It was such a huge sigh of relief and then I did shed tears.
Thereafter, the transition was pretty easy. We were assigned a new support coordinator and the therapies continued as normal. At my first meeting with the new support coordinator she informed me that aside from the therapies my son was already receiving, we were now eligible for respite and habilitation. I did not know what either of those services were but I learned that respite meant that someone would come in and watch my son and give me a break. Woo hoo! Habilitation meant that someone would come to our home and also work with my son on daily routine stuff. I have not had a chance to start either service yet but am looking forward to it. We were also given supplemental/secondary insurance. This was something new because we did not have any additional insurance under the state plan.
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