Friday, July 1, 2011

Social Services

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 scarlettgrace2010@gmail.com.

18 comments:

Connor's Mommy said...

I have no advice to help with CA social services! It definitely seems more complicated than it should be. Hang in there Mama! Sending prayers and positive thoughts your way.

M said...

I'm in california (bay area too). I have worked with many clients needing state services and have found that a case worker/ non profit agency worker is ALWAYS able to get this stuff done quicker then an individual/family. Its unfortunate how our state systems are set up.

So with that I would see if there are any social workers/counselors or support staff at the hospital or a community clinic that can assist you in this. Some places even have staff whose position is to assist in applying/getting medi-cal and SSI.

I've been deeply moved by your experiences and your love for your daughter. Best wishes.

April said...

Best of luck to you. Does the hospital have a social worker that checks in with you? When I had two hospitalized kids at one time in our Children's Hospital, the social worker came by to offer help without my ever saying a word.

"La Beba" said...

Have you looked into the First Five program? I'm helping a friend down here in San Diego and the woman I spoke with said that they help with Care Coordination. They might at least be able to let you know if you've missed a program or should go in a different direction. They also might be able to link you with an advocacy organization that has helped other parents who have gone down this road before.
heather

thehistoryofus said...

It looks like the California Department of Education may have some resources and information that may be helpful. They should be in office even over the summer (in fact now is a slow time to get in touch with them).

http://www.cde.ca.gov/sp/ss/dh/

Sarah said...

That really stinks. I'm in Michigan and we had to get our one twin help because of his heart defect and surgeries and it didn't take all that work. We didn't need all the finincial help (luckily I din't have to quit work but I would have if I had to) but we got what we could.

Hugs to you.

Kerri said...

Just thought I'd let you know that you may have better luck going to your local Human Service agency office, at least in regards to Medi-Cal, to turn in all of your information. If Scarlett has never been in the system, then they will need the actual original birth certificate. As I did not want to give my son's original with not assurance of getting it back, he only qualified for emergency medical services. This can (and will be fixed) if I go to my nearest office, have someone there make a photocopy of the original and validate the copy stating they've seen the original, AND sign an affidavit of identity stating my son is who I (and his birth certificate) say he is since I do not have a passport or any type of photo identification for him. I know the lines at these places suck, but it may save you some time and hassle in the long run.

Brandi said...

This is all great information that helps me in moving forward. And, as always, plans have already changed since I wrote this post this morning! Hopefully I can get some of this worked out next week!

LC said...

The school district should still have special ed personnel working for summer school. You may have to storm the office to get anywhere, but there should be at least a skeleton staff working that can get you what you need.

CCS should also have a local branch. In our school district, it is located at one of our elementary schools that houses most the special education students who benefit from it. When we thought we'd need CCS, we didn't get a call back for at least a month after we applied. But, if you can find the local branch office you may be able to go in and speed up the process there, too.

Anything to do with special needs means you have to be an advocate for your child. As a special ed teacher, I often encourage parents to be as pushy and annoying as possible because, unfortunately, that's the only way to get anything done sometimes.

Ashley said...

Wishing you luck! I have to deal with those offices for my kids insurance and it is a never-ending process- always a form to fill out, copy, or redo. Plus, caseworkers who NEVER return phone calls.

My only advice is: KEEP BEING PROACTIVE. Give them 2-3 business days to return a call if you leave a message, then call back.

I had a caseworker who refused to give me food stamps over a year ago because he wasn't convinced I was a resident of the state. I had an out of state license. So I said, look, I will go get a new license and come back with a copy of it. He told me that "their office had different standards and a license wouldn't cut it!" So, then I asked him: "So, as far as every other agency in this state is concerned I could have identification saying I am a resident, and you would still refuse that?" Needless to say, I filed a complaint and less than 3 weeks later, received all my benefits.

So, this is totally none of mine (or anyone elses) business, but have you looked into other services to see if you qualify for additional assistance? Food stamps, utility assistance, etc? Sometimes it is hard to accept that kind of help, especially for men (but Chris seems pretty reasonable!)

Best of luck, Brandi! Have a great fourth of July weekend. (I guess?)

Kelli said...

I don't know much about California, but I'm a licensed social worker in Texas, so I definitely know what it's like to navigate the system. I used to work with HIV/AIDS patients and help them coordinate their benefits and eligibility with various organizations, as well as apply for SSA benefits. Getting SSI would be a big help even though it's not much money because most states give Medicaid with it automatically. Maybe see if there is a private/non-profit organization that provides case management for cancer patients (I know of some of them in my area). That way you could have one social worker to help coordinate all of these applications and programs, plus their knowledge of additional programs and resources would be invaluable.

Janette105 said...

And I thought filling out all the paperwork for a Leave of Absence/Pregnancy Disability was a lot of work. I know it really sucks but once you're done, it'll be such a relief!! Hang in there!!

Lots of prayers for Scarlett, you and hubby, and many for your sister, too (I lost my first child at birth so I have a soft spot for her, too). ((HUGS))

Triauna said...

Oh Brandi I sort of feel your pain! I say sort of because 1. I'm from Wisconsin and 2. A similar situation happened to my mom. My little brother was born with severe cerebral palsy and I remember clearly my mom going through similar struggles for him. SSI, Disability, handicap parking stickers, schooling, doctors appointments, insurance, etc.! I was young at the time he was born (7yrs) but I remember waking up at night to hear mom crying her eyes out! I would get up, give her my favorite teddy, a big hug, and tell her it will be ok!

Not helpful, I know, but sometimes it helps to know you're not alone! Stay strong, you have done AMAZING this far! You inspire me so much and so does the strength of your whole family! HUGS!!

ilovethesekids said...

Ugh- as a mom of a child with special needs & a social worker, I know too well how frustrating the bureaucracy is!! You will get through it though-you seem very smart and motivated to do everything you can. Try to be patient with the workers you come into contact with- most of them are extremely overworked (& underpaid) and most are not able to keep up with their workload even if they are working very very hard. I have found that other parents of kids with special needs in my local area have been the greatest help- maybe you can find some kind of online support group that could give you some tips (Yahoo has a lot of them). And I agree that you should remember that the squeaky wheel gets the grease- try to forget about not wanting to seem pushy (as we are taught as kids!) Be polite but persistent. Oh, and it could be different in different states but I really thought the EI/Birth-three people were responsible for all educational stuff until age three, when the school system takes over. I have never heard of that... Good luck- you will figure this out!

Misty said...

I'm a social worker in Washington but worked in case management for about a year and a half in Oakland, CA... So right by you! All I can add to the previos posters' advice is how important it is to get documentation for EVERYTHING. Also, be prepared for a denial of Scarlett's application and ready to appeal because most applications are denied the first time around. The squeaky wheel gets the services... So be squeaky!!!

Brandi said...

Thanks, everyone! All these ideas has given me a little energy to keep pushing. I appreciate the reminder to be patient with the social workers - they are overworked and underpaid, and, boy, have I felt that before!

brandi said...

Brandi, I am not familiar with California, but I work as an Early Interventionist in South Carolina (birth-3 program). This looks comparative to your Early Start program. If it is, the Early Interventionist assigned to Scarlett will do service coordination for your family. I am expected to use family input and goals to match my kids to the services that can help them...this includes OT, PT, and ST; but also assisted technology such as hearing aids, leg braces, etc. A lot of times, the OT/PT/ST can be provided in the home, so you don't have to worry about toting Scarlett to various appointments. Like I said, I don't know about California...but perhaps you can call the Early Start program to get a handle on what service coordination they will do for you once Scarlett begins before you run around and try to do it all yourself.

Chicory Blue said...

Although I do not live or work in CA I would imagine that the school district has staff that works every week and they are required by law to evaluate your daughter for therapies in specific timelines-including through the summer. It is very different for initial entry into the (special education) system before Kindergarten age.
You can look at the federal laws for IDEA-Part C I believe Part C is 0-3) and then look into how CA interprets the laws (probably a phone call or 10 to CA's dept of eduction-or it is probably on their website..)
I *think "Early Start" is different than "Early Intervention (therapies, hearing support, etc). Here in PA Early Start is an early form of Head Start in the home....in simple terms. THAT is why there is a "month wait" for a phone call. IDEA (early intervention) prohibits that...
In addition to everything else-You are looking for SLP, OT, PT, developmental and hearing for SCarlett-it is part of the "special education" laws Unfortunately, It goes by several names...Early Intervention, Early Steps, Birth-3...and I am sure others-depends on the state I know she's a baby- but should she need services in elementary school...this is the presursor...it all ties together. 1 law (IDEA) that goes from 0-21.... broken into several "parts".