October 30, 2008
People are People
Special needs are a perplexing topic to the peripherally involved. Some of them are supplemental caregivers, therapists, billing staff, insurance agents, to name a few and they know the key words and tricky phrases but don't really have a great handle on the actual topic at hand. Sure, the may know that flapping behaviors are soothing the autistic child, but don't know why. Others may be aware that the road that you and your child are traveling down is long and hard, but don't understand that there may not be a magic bullet or cure to end your trip. A special needs veteran may already know this, but it bears repeating. In all things you have to be an advocate for your child at all times, in all situations, good and bad.
People are people- we all have our own interests, our own needs, demands, and tasks. Everyday, we intersect with these people, people with decision making powers or even just people that can affect our day by their action or inaction. It's easy to forget when we're dealing with our own foibles and issues that everybody else we have to deal with are doing the same thing. That said, it doesn't mean that they don't need a push now and again.
Case in point- Marissa wasn't technically “special needs” at this point, but issues with insurance is probably a day in and day out burden for parents anyhow. We had just transitioned from the one month newborn coverage under the mother's insurance to a separate entry on the same family policy. We may not have noticed a problem ourselves, but a bill for Marissa's care crossed at exactly the same time there was a faux gap in coverage. When the just sub $1000 bill arrived due to no insurance, I hit the roof.
Calls were made- the first to the wife's employer who claimed no gap, the second to the insurance company who stated that the wife's employer didn't report the child, which was a ludicrous statement at it's face. Both statements were a conundrum. I spent the afternoon pressing and pressing, regardless of both representatives pleading for us to call back in a few days. We still hadn't shifted into “full court press” mode for things Marissa, as to this point she was relatively health drama free. Marissa's mother didn't let me wait for the callback, as she rightly assumed the longer that this process was going to take, the less likely it was going to be dealt with in a seamless (to us) manner.
Ultimately it took a reluctant conference call between the Human Resources department at the Wife's workplace and the insurance company to get things worked out. Simple computer error, as it turns out, but everybody was so concerned about getting blamed for the problem, nobody confessed to causing the problem in the first place. This is a perfect example of differing agendas- both HR and the insurance company wanted time to circle the wagons, and figure out who was to blame. Our shepherding prevented us from being entangled in the imbroglio and fixed our problem.
So, that said, who have you had to push to make sure that your needs were met? Did you have to burn any bridges to do it? Oh, incidentally- leave a post in this thread with your pushing stories. I'll pick one at random on November 8 (Marissa's Birthday!), and I'll send the lucky winner a 2lb bag of Jelly Belly Bellyflops. Consider it something to gnaw on when you're on hold in some horrible phone voice mail system.
No story of a judicious (or not so judicious!) push, no jellybeans!
Filed under Advocacy, Mike by MarissasDad
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5 Comments on People are People »
#1 - Deborah @ 2:44 pm
So many stories….so little space. But, here is one story about which I am the proudest. First, because it took forever but persistence won out, and secondly, because not only was my daughter the winner, but many other people were also. this originally appeared on my blog here, but I have also listed it below:
Two and a half years ago, I requested that Ashley’s health insurance program provide modifications to our bathroom. I strongly believed that with the appropriate modifications and support, Ashley would be independent in her personal care tasks despite her significant disabilities. I knew then and I know now that she can bathe and shower by herself – she can wash her own hair and brush her own teeth – and the only support she needs for toileting is a grab bar. But, she has been unable to do these things because she did not have the appropriate supports. Ashley’s insurance program, despite the fact that they have never laid eyes on either Ashley or our bathroom, decided that she did not need the supports.
When making the initial request, I made sure I had all the necessary paperwork to back up the request. I had reports and letters of medical necessity from Ashley’s pediatrician, her neurologist, her ophthalmologist, and her occupational therapist, the person who had been working for many years to teach Ashley how to accomplish her self-care tasks. However, within a few short days of making my request, the insurance program denied it. Their reason – the type of insurance waiver Ashley was on didn’t allow for environmental modifications. There was no discussion of medical necessity, or the fact that the modifications would ultimately reduce costs in other areas. It seemed that the insurance program would prefer Ashley be institutionalized and ‘taken care of’ rather than provide the tools she would need to become independent. So, I appealed, or rather, I contacted an attorney and then appealed the decision.
The lawsuit weaved its way through the denying organization, a so-called independent hearing officer (who just happened to report to the head of the denying organization), Federal court, and back again to the denying organization. Witnesses were subpoenaed and interrogated. The Attorney General’s office for my state became involved, and finally a trial was held. Six months, yes six months, after the trial, the ‘independent’ hearing officer ruled – the request was again denied. I’ve written previously about all this, albeit a little obtusely since the case was still in litigation.
As my attorney and his staff were preparing yet another appeal to yet another court, a settlement offer was proposed, allegedly to hold down the costs of more legal wranglings. So, where are we today? According to the details of the settlement agreement, all (yes, ALL) of the modifications I originally requested will be made. In addition, remember the reason I was given for not granting the request initially – that the type of insurance waiver Ashley was on wouldn’t cover environmental modifications? That has changed also. Any person on that specific waiver will now be able to access up to $5000 per year for environmental modifications.
I have contacted a contractor who will begin the modifications in early July. Ashley will finally have the chance to reach her potential in the area of independent living, and her future now holds the promise of staying in her family home for the remainder of her life. Was the fight worth it? To me and to Ashley, most definitely. To all the taxpayers who bankrolled the long, drawn out battle – doubtful.
#2 - Melody @ 2:26 am
Hi Marissa's Dad. Welcome.
I have way too many stories among my sons who live with special needs. But I will just say I have taken on our State in legal battles…w/o an attorney to assist…and won…more than once.
One should never say never.
And don't enter me for the candy…I so need to abstain.
#3 - Heidi @ GGIP @ 2:52 pm
I feel like I am constantly on the phone with the insurance company.
#4 - Rickismom @ 5:38 pm
What phone!????
When pushing, I NEVER use the phone. I send registered letters. Then they know I can prove it in court……
#5 - MarissasDad @ 9:54 am
Yea, I prefer registered letters too, but in this case, time was of the essence. We knew we had three or four more bills incoming to insurance, and it had to be dealt with as expediently as possible.