This week has been lovely. Scarlett has been feeling great! She has not thrown up at all, and she is playing and babbling all day long. We kept busy with her regular appointments (just two this week), a play date, and meeting one of our blog readers (Hi Debbie!) If this is anything like what the next few months will be like, I can get on board with that!
The dark side of my week has been paperwork. I am drowning in a sea of forms from the dark and endless world of social services. It is the most complicated system I have ever encountered, especially when you consider that it is designed for people who are struggling with whatever issues qualify them for the services. I have made calls, phone interviews, online requests and sent in documents. I have copied, scanned, faxed and ordered. I am frustrated, tired and not sure if it is even worth it. However, we are now in a position where we must find additional aid to support Scarlett's increasing needs, or we will be bankrupt and she won't be making the progress she should. Here's a smattering of what I have done so far:
1. Social Security: I have applied for Supplemental Security Income (SSI) for Scarlett. She is considered disabled, so she qualifies for this as long as our income falls below the incredibly low threshold (which sadly, it does now that I am not working). We have been told that this is the "gatekeeper" of services, and once we can get approved for SSI, the other services will fall in line much easier. However, I did not know the asset limit when I called last week, so thanks to our scrimping and saving, we were over the limit by $250. If I would have paid one hospital bill before calling, we would have qualified. So, I get to call back in July.
2. California Children's Services: CCS is for children in CA with disabilities. It provides physical therapy, occupational therapy and other services to all disabled children, and other services like hearing aids and speech to those who qualify financially for additional assistance. We didn't qualify for assistance with her hearing aids, but our insurance picked that up, so we didn't push the issue...and then we heard that the PT/OT services were not income dependent. That meant calling again and being re-interviewed, and then being told the social worker we have been assigned to is out of the office, so to wait for a call. That was last week, and I haven't heard anything.
3. Medi-Cal: California State medical care assistance. We have to qualify for this to get help from CCS. Their application online was so complicated, I messed up one field, which delayed the process. Then I got a packet of the required documentation I must send in: copies of driver's licenses, birth certificates, social security cards, car registrations, bank statements, utility bills, rent receipts, pay stubs, and a pile of their own forms to verify we are legal citizens (apparently birth certificates are not enough anymore). We were doing well until we realized we can't find Chris' SS card, so he has to get a new one, and the line at the office yesterday was out the door and down the street. He's going back today after work.
4. Early Start: For infants 0-3 who need developmental interventions. The waiting list for a simple phone call was over a month. I called on May 22 and didn't get a call back for a pre-interview until June 21 (when I called after two weeks, I was told they were still addressing inquiries made the week before mine, so I would have to wait my turn). This program will also help with PT and OT, but only if no one else is helping (which is so far the case!) When I asked about hearing, the social worker said I needed to call our school district...this was the week after school got out. Awesome.
5. Center For Early Intervention for Deafness (CEID): This is a wonderful program that does in-home hearing intervention for babies, then a weekly pre-school program for toddlers and support classes for parents. The audiologist suggested that they have the best program for Scarlett's hearing needs. They said I needed to talk to Early Start...who said they don't deal with hearing. Now, I can't get a response from them and will call again Tuesday.
6. School District: Apparently they are in charge of providing hearing services. I haven't heard back yet, probably because it is summer and they are not in the office as much. Plus, our school district is transitioning to a new special education director, so there isn't anyone to talk to yet anyway.
7. Therapy at Play: Scarlett will be evaluated for PT, OT and speech next week. This is a separate center designed for children only that provides all three services under one roof. Our insurance will cover a few visits, so we are doing that while we wait for everything else to come together. I found them online, and liked the idea that all the services would be together, rather than in separate locations in a place designed for kids only (many of the PT places I found were for adults or sports injuries, and then had someone approved to see kids). I feel strongly that Scarlett's care needs to be well communicated between all practitioners because it is so complicated. Having all three in one place makes that much more reasonable. However, it is about 30 minutes away from home in the opposite direction from the hospital, so it will be challenging to make the scheduling work. We're going to try for a few weeks and see if it is the right fit for Scarlett, and if so, I will fight to make everything else come together as best I can.
So that is where I am stuck. Only the therapy center has come through with a plan. Everything else is trapped in bureaucracy. It's a holiday weekend, so I can't make much progress until at least Tuesday. I just want her to get what she needs before she falls any further behind.
If you have any insight on dealing with CA state social services, I would love to know any tricks. E-mail me at firstname.lastname@example.org.