There are some days that we wish that we could get just a little bit of decent help! Today has been one of those days for me!
This morning I found myself making the 1,953,743rd phone call to one of our fine (NOT) state agencies. Is it REALLY too much too much to ask these workers to see my disabled child as a person instead of just a piece of paper or a number to push (or NOT) through the system?
I would love to figure out a way to truly be able to make it a "collaboration" between state agencies, insurance companies, providers and ME (my child's advocate)! I have NO IDEA how to make that happen!
Cole was born in February of 2007. Around November, when he was 9 months old, we were told he had cerebral palsy. After many hours of research and questions and 'just through the grapevine' I was informed there were some options for financial (touchy subject) assistance to help us to help Cole.
TEFRA, a Medicaid supplement plan that helps with deductible and coinsurance and some denied services from our insurance plan, is one of those options. After jumping through all specified hoops and time spent waiting in the state offices, I then submitted the application signed by Cole's doctor, the SSI letter I received, a copy of ss cards, insurance card & birth certificate. This was in April 2008.
We were assigned to Mr.R through DHS (department of human services). After many months of unreturned phone calls and the occasional request for additional information from Mr. R, I had no idea what I needed to do next. In August 2008 I received a letter for more information (medical records, doctor bills, hospital stays etc). I get all of this paperwork together AGAIN and send it.
I never quite knew what to do or expect as far as a 'time frame' (Mr. R was sure to say to me with every conversation, in a slow Eeyore like monotone, "I just had a case that took over a year." and would reassure me that our effective date would be retroactive 90 days previous to when I applied) so I patiently waited through the holidays with no contact. After the first of the year I once again started checking with Mr. R but he never had an answer for me.
Some time in May 2009 (I think), during a meeting with my Sooner Start Rescource Coordinator, Ms. M, I had explained this situation and she was kind enough to try to help me.
Once again I had to get additional paperwork together (some being duplicate of what I had sent in August, some being updated medical records and bills). I made multiple copies, sending them to Ms. M. She kept a copy, mailed a copy and hand delivered a copy. I also have a copy. Ms. M also spoke with Mr. R's Supervisor. Then a short time later Mr. R passed away.
During the time that Mr. R had Cole's case, Mr. R had at one time told me Cole had been approved and even gave me his ID number. After contacting providers so that they could bill, one of the providers was very kindly concerned because they thought Cole had passed away. I contacted Mr. R only to find out that that number had belonged to another little boy that had passed and that it was given to him (to give to Cole) in error. Imagine how that would make you feel as a parent!
Since that time, Cole's file has been passed off to at least 3 other workers (may be 4) in that office and I have had to send more paperwork AGAIN, which included another application, copies of my driver's license, Cole's birth certificate, social security card & insurance card...and more medical records which I have to request (and pay for some) from providers. All of which they should have had. This was sent on February 23, 2010 to B, another DHS case worker.
I last called B on March 30 and after much coercion she contacted the TEFRA office. She advised me that 2 ladies are working on Cole's file but she did not have an answer for me as far as if he has been approved or not. She stated one lady has completed her part in the decision making but the other was out of office ill. I asked her for their names and numbers so I could follow up another day. She advised me that she could not give me that information. This seems very odd, but I asked her to please try again the next day. As of April 1st, I had not heard back from her.
Our providers have been so patient but also are concerned about how they will bill back that far as they state they can only bill back 1 year. I was told that due to special circumstances (the DHS workers taking so long, not me) that the providers could still bill TEFRA.
About a month ago we FINALLY received an in-home visit from a nurse and was advised we should hear something and/or receive Cole's ID card within 2 weeks.
THEN....the 1,953,743rd phone call this morning....
Only to find out they decided to make his TEFRA effective as of February 1 ..... 2010!!!
Meaning all deductibles (for 3 years), all 10% of every hospital, therapy, doctor, and medical equipment bill, and all charges that my personal insurance did not feel was a medical necessity for my baby, for the past 2 years ...we will be out of pocket for.
We hate to have to ask or accept any help to take care of any of our children as we feel it is our responsibility, but having a child with special needs has forced us to ask AND accept whatever help we can receive, especially when one piece of equipment (wheelchair) costs as much as a car (over $10,000).
To top it all off, I had asked B how long she has had this approval and ID information. The first words she said were an excuse that she had been ill. I asked when I could expect the actual ID card and THEN she advised me it would be sent after it was certified…which she “thought” she had done yesterday. Again I felt like to her my baby was just an unimportant number that could be certified whenever she felt like getting to it, instead of thinking of how important it could be to help us.
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Cole on Smokey
Cole playing games!
Cole shooting a football into the net.
While Cole is at school they work with him and he is seen by his team of therapists. They are truly amazing!
His therapists are Suzanne, Joan (at the school-physical & occupational therapy) and Lindy (from our state’s early intervention program-speech & swallow therapy) & I take him outside of the school to see Lisa (for swim therapy).
Joe found this article in the paper that covers Cole’s school and I wanted to share. As you will see, they have a great facility and they do great things with what they have! Below is the article from The Oklahoman:
Special Care Inc. recently hired a new employee, and he instantly became the most popular worker.
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He’s also one of the busiest at the northwest Oklahoma City center, which primarily serves disabled children.
He works a 9 a.m. to 6 p.m. shift Monday through Friday, and he only takes one break, for lunch at 4 p.m. He helps kids during physical therapy. He takes them out for walks. He even tucks kids in at nap time.
But you won’t ever hear him brag about his work.
Costa, a 2-year-old black Labrador retriever, has been on staff at Special Care for a little more than four weeks, and Pam Newby, the center’s executive director, said he’s been an invaluable addition.
"We really strive to provide the very best in cutting-edge treatment for our kids, and he’s really helping us do that,” Newby said. "The kids just love him. Even the babies love him.”
Special Care serves about 135 children between the ages of 6 weeks and 19 years, and helping so many can be taxing on a staff of 35. But Costa has made all jobs at the center more enjoyable.
Long process
Newby went through a 10-month process to get Costa from Canine Companions for Independence in Oceanside, Calif.
She sent in an application and then had a phone interview. Next, she had a face-to-face interview via the Internet so officials could make sure Costa would have a good home after his workday.
Following that, Newby went to Oceanside for a two-week training program in June to get acquainted with how to work with an assistance dog.
Katie Malatino, a public relations coordinator for Canine Companions for Independence, said the group spends roughly $45,000 training and preparing each assistance dog. The dogs are then given free of charge to agencies that pass the application and interview process.
All Newby was responsible for was her transportation to Oceanside and providing for Costa’s living costs and routine visits to the vet.
Since arriving at Special Care, Costa has been instrumental in helping the kids, said Suzanne McQuade, a physical therapist at the center for 14 years. The main thing Costa does is provide motivation for kids to do better in their therapy.
But the most impressive thing about him is how he stays calm around so many people.
"The kids will sometimes pat him a little too rough or they might accidentally kick him with their foot when they’re walking because they don’t have good motor control,” McQuade said.
"He stays on task and focused and disciplined no matter how unpredictable the children are in their movements.”
Getting a co-worker?
Newby and McQuade said one of the first things each kid asks when they get to the center is, "Where’s Costa? Can we pet Costa?”
But Newby said she notices Costa is tuckered out when she takes him home at the end of the day.
Having more than 135 pairs of hands eager for attention every day can take a toll on even the most diligent of workers.
Because of Costa’s impact on everyone involved with Special Care, Newby said another canine companion could be on the way. She didn’t have an estimate as to when that could happen.
"I think there’s room for one more,” Newby said.
"Costa helps us serve our kids better, and that was the whole goal when we decided to get him.”
Related Topics: Health and Fitness, Medicine, Medical Treatments and Procedures, Physical Therapy
