I had a last minute meeting with Dr. Reynolds this morning. I called to schedule an appointment and they called me back and got me in within 45 minutes. I can’t say enough good things about Dr. Reynolds. He’s been there for Gavin since the very beginning and for that I will always be grateful.
Today’s appointment was not an uplifting one but instead was a strategic planning session.
We discussed everything for well over an hour. Residential placement is our only option.
Once we crossed that line, we talked about what the process involved and how extremely difficult it will be to aquire the necessary funding. The costs are basically broken up into 3 pieces. They are as follows:
1) Treatment, therapy, groups, testing, medication etc. This will all be covered by Medicaid, as Gavin’s on SSI.
2) Schooling and education. This is not covered by insurance and is the responsibility of the local school district to pay for. Now because Gavin is in a charter school, I’m not sure how that will work. It might be an IEP thing. We need more information on this.
3) Room and Board. This is also not covered by insurance and is our out of pocket expense. When I spoke with the treatment facility last month, I learned that for Gavin, room and board will run approximately $500/day. That’s right. You read that correctly. It will cost roughly $500 per day, for Gavin to stay there. That works out to be about $15,000 per month.
This is why we have to locate funding. It’s simply not possible for us to cover that amount.
In order to aquire funding we will have to work with an organization called Stark County Family Council.
We have worked with them in the past and completed all the requirements prior to our obtaining funding. At that time, we managed to avoid residential care because a medication change was made and it really helped. However, all we did, without knowing, was postpone the inevitable.
At this point, I don’t know if we have to redo the entire process or if we will be exempt for past completion.
That is the single biggest obstacle we have to overcome. We need funding and for that we may have to go through the process called Wraparound. It’s a fantastic program that puts us in contact with as many sources as possible.
Naturally, we would like to avoid having to do this all again, simply to expedite the process.
At this point, this is all I know.
When I learn more, I’ll pass it along. My goal is to help shine a light on this process so that those coming behind us, will have the information they need to make this less scary and overwhelming.
I want something positive come of all of this.
This was posted via WordPress for Android, courtesy of Samsungs Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.
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Camp Hill Special School in PA is also something you may want to consider .http://www.camphillspecialschool.org/
It is a school and residential program. It is expensive but still a lot cheaper than $500 per day. The residential program is less than $70,000 per year. Half of that cost is the school which your district would cover. It is a Waldorf school.
I am pretty sure that in terms of the education piece, you have the right to ask for an emergency PPT, and a representative of the special ed branch of the Board of Education might have to be there. The school should schedule it within 5 days -by law-. Given Gavin's needs and the fact that the school cannot provide an appropriate (legal ed term) education for him, with all the psychological, educational and psychological testing, along with the fact that the school said that they cannot take Gavin back this year, they are a hundred percent responsible for his out of district placement and thus, for the $.
@Lilia B the school hasn't turned him away. The doctor had said he may not be medically stabized enough to return. His school will help in any way they can. I think this falls on the local public school system, right? Gavin's in a private charter school. Does this matter?
@lostandtired @Lilia My bad, I thought that the school had turned him away. Sorry about that. Regardless, the thing is that if his challenges are such that the school is unable to meet his educational needs, they should have to do the out of district placement. Let me double check on the private charter school issue. Also, just in case, do you have an educational attorney? In CT we have legal assistance programs, where excellent pro bono lawyers help the parents navigate the intricacies of the system as their educational advocates.
Rob, I was considering residential for my son and found that a combination of a DD group home and a day treatment school worked very well (do not recommend Shipley Day Treatment though). We were able to get an emergency waiver for him that pays for the staff at the home though DD. His school is paid for by the district, and he receives SSI which pays for his rent, food and utilities. I would really consider that option if you can make it work. Marnie knows my son and knows what we worked out…. I don't know who you will be working with at Family Council. Its a cheaper and less restrictive option. I was told over and over that my son was not far enough gone for residential and that residential could leave him with worse behaviors… Gavin may be different.
@MariaHall We did talk about something like that. Gavin would not benefit though. Gavin is definitely far enough gone. That train left the station and long time ago. 🙁
It is a bit of a shock to see how much the room is monthly, I guess over here with the NHS it is something I never really appreciated until now. It seems as if some other folks are giving you some good suggestions and I hope that one of them works out for you and the family. I wish there was more that I could do except pass on my thoughts and well wishes. Stay strong mate and I hope things work out for the best.
@nosleepintoon thanks, I appreciate the support…
I am glad you are working out the details. I'm sure it's not easy, but thanks for enlightening the process for others that might benefit from this info.
@rmagliozzi I appreciate your kind words 🙂
Have you considered a voluntary placement (into foster care)? Might look into that option. Sometimes you are able to transfer the child to another state that has a bed and able to care for the needs for the child.
@Joannie hadn't thought about that. Might be an option. Thank you.
Rob, have you looked into the new self waiver? In ohio through the board of Developmental Disabilties? For adults and also kids with behaviors? Check it out, you may find it to be helpful.
@Chloe123 I had completely forgotten about that. Do you have any experience with the self waiver?
@lostandtired @Chloe123 No I do not, but I have heard about it and read some about it online. You should call your local board of developmental disabilities and look into it.
@Chloe123 I will be doing that in the morning. Thanks again Chloe
@lostandtired @Chloe123 You are very welcome Rob