Transparency
In support of
Zeke's Journey
View Support Registry
Zeke's Journey
I wanted this to be my first update on our new page launch, but the hospital visit was a huge surprise and I needed to pivot on my updates. I am sure some people are wondering about the fundraising and why we switched platforms so I wanted to share this information. I always appreciate transparency and I felt that you would as well.
We have applied for Medicaid and been denied.
We have applied for SSI and been denied.
We did not know about NICA until it was too late, and unfortunately, we are not able to legislate this any further.
We have been working with our local representative on the NICA issue, which is how we know we are not able to legislate it any further. He has been able to partner us with APD (Agency for Persons with Disabilities) and has been working alongside us to get more resources and support for Zeke. We have been accepted by this program, but we have been placed on the wait list for the Medicaid waiver. I have been directed as to what my next steps are in this situation, and am actively pursuing them. If we are able to obtain the waiver, I will be sharing that wonderful news here.
We are very blessed that Jon has such an amazing job, but are finding out what the "tricky middle" is like - we make too much to receive certain funding even though Zeke's diagnosis would warrant it. Additionally, these agencies are only considering what is coming IN, not what we have going OUT.
So in the interest of transparency, I wanted to share the nitty gritty - the monthly numbers we are juggling as well as his whole therapeutic picture.
Ability Plus, Zeke's intensive therapy, costs between $7000-8000 per3 week session. It has been recommended that we attend this 2x a year if possible. This does not include gas, lodging, food, etc., which would bring the amount per 3 week session to approximately $10,000-11,000.
Zeke's PT, has graciously agreed to come here 2x a month - she is not from the area so we are really thankful for this sacrifice on her part. This is huge b/c we have always had a terrible time with PTs and Zeke LOVES his PT. It would be MOST beneficial for Zeke to be have 3 hours per session with her since it can't be weekly. This is approximately $900/month.
OT is local at approximately $400/month and speech therapy is in home approximately $500/month.
I'm throwing a lot of numbers you way, so please let me give you the bottom line - that is $1800 on therapies per month ($21,600 per year). And truthfully, his therapists and functional neurologists have recommended more frequent sessions but we don't have the funding to do it at this time. Include his intensive therapy in that annual amount and we are looking at $28,600-29,600.
Speaking of functional neurology - which has been HUGE for Zeke's progress - is a cost that is not covered by insurance at all.
We have bi-weekly visits with Dr. Chung, who is based in Wellington, and that is $160/month.
We are also blessed to be working with Dr. Antonucci, who is renowned in his work with HIE, 2 times a year and his visits usually run $500-800 per session.
Usually people will ask about insurance.
We do have insurance. They only pay for 60 therapy sessions total for a calendar year. That only takes us to about 5 months per year for Zeke to receive therapy.
Yes, we do also have FES - the Family Empowerment Scholarship. We have been able to utilize this funding source for many of these therapies and are so grateful. However, now that he is in school, I also need to utilize more of those funds for educational materials and items to support his learning since I homeschool him!
We have also been so blessed to have friends who have actively fundraised for us. These fundraisers have paid for most of our intensives. We are always blown away by the love and support we receive at these fundraisers.
I am also actively pursuing grants. Every time I apply for one, I will be posting an update. Every time we get one, we will be celebrating with you and also putting that toward our goal of $30,000.
Thank you for letting me take time to share. Jon and I do not take these donations, helps and prayers lightly. We really appreciate the support and want you to know that we are handling these donations with care for our sweet Zeke.
We have applied for Medicaid and been denied.
We have applied for SSI and been denied.
We did not know about NICA until it was too late, and unfortunately, we are not able to legislate this any further.
We have been working with our local representative on the NICA issue, which is how we know we are not able to legislate it any further. He has been able to partner us with APD (Agency for Persons with Disabilities) and has been working alongside us to get more resources and support for Zeke. We have been accepted by this program, but we have been placed on the wait list for the Medicaid waiver. I have been directed as to what my next steps are in this situation, and am actively pursuing them. If we are able to obtain the waiver, I will be sharing that wonderful news here.
We are very blessed that Jon has such an amazing job, but are finding out what the "tricky middle" is like - we make too much to receive certain funding even though Zeke's diagnosis would warrant it. Additionally, these agencies are only considering what is coming IN, not what we have going OUT.
So in the interest of transparency, I wanted to share the nitty gritty - the monthly numbers we are juggling as well as his whole therapeutic picture.
Ability Plus, Zeke's intensive therapy, costs between $7000-8000 per3 week session. It has been recommended that we attend this 2x a year if possible. This does not include gas, lodging, food, etc., which would bring the amount per 3 week session to approximately $10,000-11,000.
Zeke's PT, has graciously agreed to come here 2x a month - she is not from the area so we are really thankful for this sacrifice on her part. This is huge b/c we have always had a terrible time with PTs and Zeke LOVES his PT. It would be MOST beneficial for Zeke to be have 3 hours per session with her since it can't be weekly. This is approximately $900/month.
OT is local at approximately $400/month and speech therapy is in home approximately $500/month.
I'm throwing a lot of numbers you way, so please let me give you the bottom line - that is $1800 on therapies per month ($21,600 per year). And truthfully, his therapists and functional neurologists have recommended more frequent sessions but we don't have the funding to do it at this time. Include his intensive therapy in that annual amount and we are looking at $28,600-29,600.
Speaking of functional neurology - which has been HUGE for Zeke's progress - is a cost that is not covered by insurance at all.
We have bi-weekly visits with Dr. Chung, who is based in Wellington, and that is $160/month.
We are also blessed to be working with Dr. Antonucci, who is renowned in his work with HIE, 2 times a year and his visits usually run $500-800 per session.
Usually people will ask about insurance.
We do have insurance. They only pay for 60 therapy sessions total for a calendar year. That only takes us to about 5 months per year for Zeke to receive therapy.
Yes, we do also have FES - the Family Empowerment Scholarship. We have been able to utilize this funding source for many of these therapies and are so grateful. However, now that he is in school, I also need to utilize more of those funds for educational materials and items to support his learning since I homeschool him!
We have also been so blessed to have friends who have actively fundraised for us. These fundraisers have paid for most of our intensives. We are always blown away by the love and support we receive at these fundraisers.
I am also actively pursuing grants. Every time I apply for one, I will be posting an update. Every time we get one, we will be celebrating with you and also putting that toward our goal of $30,000.
Thank you for letting me take time to share. Jon and I do not take these donations, helps and prayers lightly. We really appreciate the support and want you to know that we are handling these donations with care for our sweet Zeke.
Comments
Bethany Baker