I ended my last post stating that we needed to be more involved in the down syndrome community after the re-determination process.
Perfect timing, the National Down Syndrome Congress had their annual convention in Phoenix and we were able to attend. It was a great eye opening experience with a lot of information for parents and advocates of those with down syndrome. My husband and I both agreed that it was definitely worth our time and a great experience for our entire family. I will say briefly that the seminars about inclusion in the education system opened our eyes. We realized we were actually doing the opposite of what many families at the conference were fighting for. We had our son registered in the special education program in the public school system but worked it so that he would be put into the general education classroom as much as possible.
Let me back track a little. Prior to the conference we had been trying to decide where we would place our daughter for the next school year. An opportunity to attend another charter school had opened and we considered switching her. While filling out paperwork at the new charter school, one of the administrators introduced himself and started talking to both kids. He asked why we were not also registering my son. I explained that he had special needs, specifically down syndrome. He scoffed at me (in a nice way) and said there was no reason why my son could not also attend the school like his sister. He further added that the school has students with IEP's and handles students with IEP's all the way through high school. He encouraged me to submit an application for my son and even went so far as contacting the Special Education Coordinator and having her contact me personally. Ultimately it was his encouragement and his belief that my son could do just as well in their charter school that encouraged me to also submit an application to the school where my daughter was currently enrolled as well.
As a sibling my son got admission into the same charter school as my daughter. We then met with the school's special education coordinator and her first question was why my son wasn't already enrolled? She was so confident that my son would do well that I was really surprised and overwhelmed by her enthusiasm.
In the meantime, we attended the convention and afterwards my husband and I reached the same conclusion. We should do what we can to make sure our son gets a more inclusive education and ultimately that meant withdrawing him from the public school system and formally enrolling him at the same charter school his sister was attending. My son was waitlisted at the new charter school so we ultimately only withdrew my daughter. In the end, one of the deciding factors for us was the fact that I would be able to volunteer and be in the classroom with my son at the current school versus the new charter school, which had a closed campus - no parent volunteers allowed.
It was so exciting for my son to be attending the same school as his older sister and a huge milestone for us. I admit it was emotional for me because I had previously resigned myself to the fact that my kids would never be at the same school and that their education tracks would be different. Not anymore! Of course, the learning curve for my son has been and will continue to be a steep one. He has a lot of homework (for him) each night versus none the year before. Plus we are working as hard as we can to keep him just a little ahead of the rest of the class in some areas to give him a chance to stay at the same level as his classmates. It has not been easy but he is doing well. Academically, it has been pretty challenging. He has spelling tests of 30 words a day (only the last 5 count) but that is 5 more than he had last year. He is reading a lot more and math has been the most difficult subject. There is also science and history. However, it has been great working with the first grade teacher and the special education team. I understand now that including him in a regular class makes him strive to work harder and raises our expectations of what he can accomplish. Obviously, as the curriculum advances, it will be more challenging for him but at least we have his sister showing him the way and she is a great example.
Saturday, October 3, 2015
Thursday, August 13, 2015
Eligibility for services - follow up
Sorry for the delay in posting again but the redetermination process was really frustrating, draining, upsetting, exhausting, etc. I really did not want to deal with it or talk about it because I got so worked up every time I thought about it but now that there is some distance I think I can handle it.
My last post ended while we were waiting for the official letter of termination to arrive. Unlike the week promised by the support coordinator supervisor, the official letter for termination of services did not arrive until 2 weeks or so after my conversation with him. During this entire time, I had been in frequent contact with the supervisor and he kept telling me that he did not know what was going on because another section of the department was handling the redetermination process. I was naive and believed him so I was shocked to see his signature at the bottom the letter terminating services. I really felt like I had been deceived because it did not make any sense to me that the supervisor would sign the letter if my son's termination of services was "handled in another department". I did not think I could have gotten more upset than I already was, but I definitely did.
Once we received the letter, we met with our attorney as soon as we could. We also stayed in constant contact with our advocate. Our attorney contacted the agency on our behalf to let the agency know that we were filing an appeal to the termination. During this period, I also got in contact (through a mutual friend) with another mom of a son with Down Syndrome and she suggested that when we file our letter to the agency stating why my son's services should not be terminated, we also include letters from his therapists and our pediatrician supporting our position.
One thing I learned through this process is we do have a very supportive network. The therapists, without hesitation, agreed to write letters on my son's behalf. Our pediatrician also agreed to write a letter on my son's behalf advocating why he needed to maintain services. Interestingly, our pediatrician asked me to provide an initial draft of a letter and thankfully a dear close friend who does pediatric social work was able to help with the letter. I was able to pass along all the letters to our attorney who also found case law to support our position.
At the same time we had to take our son to get a psychological evaluation that would hopefully provide results favorable to our position. Again, it was through this new network of advocates that we were able to find an doctor who happened to have an availability in the critical short time frame under which we were working. The anticipation of the evaluation was brutal. I tend to stress and worry but I don't think I have had this type or degree of stress ever in my life. We could only hope and pray that the doctor understood our position and why we were having our son tested. And of course, we had to hope that our son did not do too well on the testing. Can I say that really sucks. The few times, I have had to hope that he does not do well were just awful and it does not get easier over time. Really, really, really hard and counter intuitive to every thing I have to root for my son to not do his best and even to fail because that will help him more than doing well. It is just the WORSE feeling as a mom. I could say more but I can feel myself getting upset just thinking about it so I'll stop. In the end, the test results supported our position for the continued need for services.
Once we filed our appeal all we could do was wait. Amazingly (and I say this with as much sarcasm as I can muster), our newly assigned support coordinator, called us while this was all going on and asked if he could transfer my son's file to another division because, you know, the zip code that he was covering was getting too big and they decided to split it up so my son could have a new support coordinator (who had no clue what was going on)?! We shot down that request in writing as quickly as we could. There was no way we were going to let my son's file be transferred to someone new so that it could get lost in the shuffle. The support coordinator accepted our decision and so all we had to do was wait.
About 3 weeks after we filed our submission, we got the response we had hoped and prayed for. Our son's services were reinstated. Just to be clear, there was no gap or stoppage of services while we were filing the appeal - the government does not take away services immediately but if we had lost then the services he was receiving would have eventually had to stop or we would have had to pay for them out of pocket (very expensive). It was such a huge huge huge relief.
In the end, in spite of the painful process, I learned a lot and the biggest thing I learned was that I needed to be more involved with the Down Syndrome community because there is a lot I do not know.
My last post ended while we were waiting for the official letter of termination to arrive. Unlike the week promised by the support coordinator supervisor, the official letter for termination of services did not arrive until 2 weeks or so after my conversation with him. During this entire time, I had been in frequent contact with the supervisor and he kept telling me that he did not know what was going on because another section of the department was handling the redetermination process. I was naive and believed him so I was shocked to see his signature at the bottom the letter terminating services. I really felt like I had been deceived because it did not make any sense to me that the supervisor would sign the letter if my son's termination of services was "handled in another department". I did not think I could have gotten more upset than I already was, but I definitely did.
Once we received the letter, we met with our attorney as soon as we could. We also stayed in constant contact with our advocate. Our attorney contacted the agency on our behalf to let the agency know that we were filing an appeal to the termination. During this period, I also got in contact (through a mutual friend) with another mom of a son with Down Syndrome and she suggested that when we file our letter to the agency stating why my son's services should not be terminated, we also include letters from his therapists and our pediatrician supporting our position.
One thing I learned through this process is we do have a very supportive network. The therapists, without hesitation, agreed to write letters on my son's behalf. Our pediatrician also agreed to write a letter on my son's behalf advocating why he needed to maintain services. Interestingly, our pediatrician asked me to provide an initial draft of a letter and thankfully a dear close friend who does pediatric social work was able to help with the letter. I was able to pass along all the letters to our attorney who also found case law to support our position.
At the same time we had to take our son to get a psychological evaluation that would hopefully provide results favorable to our position. Again, it was through this new network of advocates that we were able to find an doctor who happened to have an availability in the critical short time frame under which we were working. The anticipation of the evaluation was brutal. I tend to stress and worry but I don't think I have had this type or degree of stress ever in my life. We could only hope and pray that the doctor understood our position and why we were having our son tested. And of course, we had to hope that our son did not do too well on the testing. Can I say that really sucks. The few times, I have had to hope that he does not do well were just awful and it does not get easier over time. Really, really, really hard and counter intuitive to every thing I have to root for my son to not do his best and even to fail because that will help him more than doing well. It is just the WORSE feeling as a mom. I could say more but I can feel myself getting upset just thinking about it so I'll stop. In the end, the test results supported our position for the continued need for services.
Once we filed our appeal all we could do was wait. Amazingly (and I say this with as much sarcasm as I can muster), our newly assigned support coordinator, called us while this was all going on and asked if he could transfer my son's file to another division because, you know, the zip code that he was covering was getting too big and they decided to split it up so my son could have a new support coordinator (who had no clue what was going on)?! We shot down that request in writing as quickly as we could. There was no way we were going to let my son's file be transferred to someone new so that it could get lost in the shuffle. The support coordinator accepted our decision and so all we had to do was wait.
About 3 weeks after we filed our submission, we got the response we had hoped and prayed for. Our son's services were reinstated. Just to be clear, there was no gap or stoppage of services while we were filing the appeal - the government does not take away services immediately but if we had lost then the services he was receiving would have eventually had to stop or we would have had to pay for them out of pocket (very expensive). It was such a huge huge huge relief.
In the end, in spite of the painful process, I learned a lot and the biggest thing I learned was that I needed to be more involved with the Down Syndrome community because there is a lot I do not know.
Wednesday, May 20, 2015
IEP and eligibility for services
I had originally planned to write this post about my son's annual IEP meeting.
I hate that I have to feel like I need to steel myself to fight for his services at school and that we are not really meeting with his school "team" but that we (his parents) are the only ones really advocating for him. Here, in our state, the IEP (Individualized Educational Plan) deals only with the services he will receive at school for the upcoming school year. That means first grade this fall. Yikes! Time goes fast. He only receives speech and occupational therapy and I figured it would not be that big of a deal to keep services going but again the therapists proved us wrong. In a nutshell because he was doing well and meeting goals they wanted to lower the number of hours for his services as per school guidelines. That may not sound so bad but to us it is totally counter intuitive. Our position - shouldn't he at least maintain at the current level so that he doesn't fall behind as each school year he faces more expectations and school work becomes more challenging? Each year is presumably a little more difficult than the current year so our feeling was that the therapies he is receiving should match that level of difficulty. Eventually, we were able to persuade the therapists to at least maintain his current therapy level.
We thought things were on track once we finished with my son's IEP meeting. Not so. Some time afterwards, I don't remember when now but not long after we received a call from our support coordinator supervisor. The purpose of the call was to inform me that the state agency was starting the process to terminate all services (therapies) for my son. I also learned that we would be receiving a letter to inform us of this officially within the next week. To say that the phone call threw me for a loop is putting it mildly.
To back track a little, at the end of last year, I was informed by the same person that the agency was going through a redetermination process for my son because that is what the agency does when a child turns 6. I was told that there really was not anything to worry about and the support coordinator supervisor agreed with me that my son should not have his services terminated and that there should not be anything to worry about. So. Wrong. Note to self, take anything the state agents say with a grain of salt and get it in writing.
After hanging up with the supervisor, I just put my head down on the table and cried. I was so upset that this was happening and that we had received no warning! I had even followed up with the supervisor at the end of January to ask what was going on with the redetermination process but was told there was no update. After trying to calm myself down, I called my husband and informed him of the phone call and cried some more. But I knew I could not spend the entire day crying (which I did anyway) but I also had to try and get as much guidance and assistance as possibly. I started calling different non-profits that I was aware of and explaining what was going on and just trying to get someone to help me. I also reached out to a friend of mine who is an attorney and he totally came through and was able to connect me with an attorney who works with special needs and situations exactly like the one we were facing. The special needs attorney let us know even before we spoke to her that we had 35 days to appeal the termination of services. I was very thankful because we were not aware of this. In the meantime, my husband was able to connect with a special needs advocate because he spoke to a co-worker whose husband happened to work in a non-profit for special needs and knew advocates. We definitely felt grateful for the timing of everything and the advocate is still working with us today. The day was a total blur but by the end of it I felt much better because we had already started the process to build up a team to help us fight the termination of services. All we had to do was wait to receive the letter and that would let us know what the state agencies position was and why they were terminating services. We had to wait longer than we expected.
I hate that I have to feel like I need to steel myself to fight for his services at school and that we are not really meeting with his school "team" but that we (his parents) are the only ones really advocating for him. Here, in our state, the IEP (Individualized Educational Plan) deals only with the services he will receive at school for the upcoming school year. That means first grade this fall. Yikes! Time goes fast. He only receives speech and occupational therapy and I figured it would not be that big of a deal to keep services going but again the therapists proved us wrong. In a nutshell because he was doing well and meeting goals they wanted to lower the number of hours for his services as per school guidelines. That may not sound so bad but to us it is totally counter intuitive. Our position - shouldn't he at least maintain at the current level so that he doesn't fall behind as each school year he faces more expectations and school work becomes more challenging? Each year is presumably a little more difficult than the current year so our feeling was that the therapies he is receiving should match that level of difficulty. Eventually, we were able to persuade the therapists to at least maintain his current therapy level.
We thought things were on track once we finished with my son's IEP meeting. Not so. Some time afterwards, I don't remember when now but not long after we received a call from our support coordinator supervisor. The purpose of the call was to inform me that the state agency was starting the process to terminate all services (therapies) for my son. I also learned that we would be receiving a letter to inform us of this officially within the next week. To say that the phone call threw me for a loop is putting it mildly.
To back track a little, at the end of last year, I was informed by the same person that the agency was going through a redetermination process for my son because that is what the agency does when a child turns 6. I was told that there really was not anything to worry about and the support coordinator supervisor agreed with me that my son should not have his services terminated and that there should not be anything to worry about. So. Wrong. Note to self, take anything the state agents say with a grain of salt and get it in writing.
After hanging up with the supervisor, I just put my head down on the table and cried. I was so upset that this was happening and that we had received no warning! I had even followed up with the supervisor at the end of January to ask what was going on with the redetermination process but was told there was no update. After trying to calm myself down, I called my husband and informed him of the phone call and cried some more. But I knew I could not spend the entire day crying (which I did anyway) but I also had to try and get as much guidance and assistance as possibly. I started calling different non-profits that I was aware of and explaining what was going on and just trying to get someone to help me. I also reached out to a friend of mine who is an attorney and he totally came through and was able to connect me with an attorney who works with special needs and situations exactly like the one we were facing. The special needs attorney let us know even before we spoke to her that we had 35 days to appeal the termination of services. I was very thankful because we were not aware of this. In the meantime, my husband was able to connect with a special needs advocate because he spoke to a co-worker whose husband happened to work in a non-profit for special needs and knew advocates. We definitely felt grateful for the timing of everything and the advocate is still working with us today. The day was a total blur but by the end of it I felt much better because we had already started the process to build up a team to help us fight the termination of services. All we had to do was wait to receive the letter and that would let us know what the state agencies position was and why they were terminating services. We had to wait longer than we expected.
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