The last week has definitely been interesting. In my last post I shared about the frustration parents can experience when trying to get additional assistance for their children who have special needs. I thought I would share a bit more about what opportunities may be available to these children. Although I am definitely not an expert in such things I wanted to share my experience with you in hopes to educate and perhaps encourage others on this journey. First, let me share about how I got to this point and how the Lord directed me to those who helped me with this process.
Earlier this year I was praying for direction from the Lord as to how I might be able to apply for what is called an EDCD waiver. There are waivers that are available to children/adults who have all sorts of special needs that are causing developmental delays of any severity or kind. These are not just limited to Autism...this can be for ANY developmental/ntellectual disorder that has been diagnosed by a physician. These waivers (there are several different kinds) will cover ALL therapies, testing and additional needs that the children/adults will need. Should the child/adult need a therapy dog for example this will assist in providing that as well as other medical aids.They also provide parents/caregivers with the ability to hire someone to help assist their children/adult with any need they have as well as provide a great amount of respite for families who are in need of it. When one is approved for this waiver they are automatically eligible for Medicaid which covers all of the therapy/doctors. For families/caregivers and the child/adult this is truly life changing! There is so much worry over finances that it is a huge weight off the shoulders of families knowing that the child/adult is able to receive all that is available to them. Some of these therapies, like ABA- Applied Behavioral Analysis- can be thousands of dollars even after insurance and this waiver covers it all without any out of pocket expense. ABA is actually the most successful therapy for children/adults with Autism. This can be truly exciting for all!
So, knowing all these things I struggled as to how I could apply for this for David. I had tried a few years back all on my own and it was a truly awful experience. As I look back it was because I had NO CLUE what I was doing. I did it all on my own and didn't have anyone to help me. As I prayed the Lord answered my prayer in such an awesome way and in HIS perfect timing. One evening a very dear friend....you know who you are.... invited me to a dinner to hear a doctor that she had been going to. I was looking for one and she highly recommended him to me. It was free food a great restaurant and it was an opportunity to have a girls night and spend some time with her so I decided to attend with her. Well, at the end of the evening there was a sweet lady there that happened to work for a local organization that provides assistance to children/adults with special needs and behavioral issues of any kind. They provide caseworkers as well who assist in the process of helping clients find the opportunities available to them. She took the time to listen for 30 minutes and asked questions about David and then gave me the name and telephone number of the director of the organization. I called him the next day and within 24 hours David had a caseworker! It was that quick! He was quickly approved for a grant which covered all the cost of the caseworker and she has been a HUGE blessing from the Lord. I was so very excited and grateful to be able to start the process again!
So, for the last 6 months she and I have studied the waiver eligibility requirements backwards and forwards making sure I understood every question that may be asked of me. We practiced answering the questions and she coached me on how to best fight for David in helping them understand how he is eligible for the waiver. Part of this process what talking to his doctors and therapists and asking them to write letters showing his medical diagnosis and how these therapies will help him continue to develop. One of the letters was from his pediatrician showing his diagnosis and how due to his feeding/sensory issues should he not receive more intensive therapy he could be at risk for nutritional developmental delay since he is small for his age in weight. The first thing you want to show is that the child/adult has a medical issue or developmental delay is causing a medical issue. So, we visited all his doctors and therapists and were able to show these letters to the nurse who did the screening. I prayed over each letter and I prayed for guidance in answering all the questions asked of me and I tried to just keep my eye focused on the opportunity that Jesus had provided us and lay it in His hands.
If you read my last posting you will probably remember that the meeting was so frustrating and exhausting I walked away from it convinced that there was no way we were going to get approved. Well, by the Lord's grace and goodness HE provided and we were approved!!!! This is truly life changing for us! I am soooo very thankful! The Lord has also provided the people that we are able to provide a job for that are sooo very good with David and understand his needs. He will be able to receive ABA as well as additional therapies for eating/speech as well. This could not happen without this waiver and as a bonus Mom and Dad can use the respite hours to go on dates! That is just the icing on the cake! :) The Lord has been so faithful and He is teaching me daily to rely on Him and surrender David and his future to HIM!
I would give those who are in the process of searching out waivers this advice... One : give it to JESUS! SEEK HIS guidance and direction. Look for these opportunities. Second: Get your child/adult a caseworker to walk you through this process. DO NOT DO THIS ALONE!!!! Three: DONT GIVE UP!!! Seek friends who have been through it and take their advice. Get wisdom from others. Just keep going and don't give up!!! It WILL happen!!! Go to support groups and learn from other parents. DONT GIVE UP!!!! PRAY! SEEK! PRAY!!!!! I hope this has been an encouragement to you. God bless you abundantly as you seek Jesus along this journey!
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