Red Tape and competing interests

So much talk about budgets lately is concerned with making things more efficient. Gosh, I hope someone besides me is thinking about the states departments of developmental disabilities. In an effort to be more localized and efficient in distributing resources to persons with developmental disabilities states have created nightmare scenarios for parents and caregivers.

We are parents, not policy experts, educational consultants, attorneys, occupational and physical therapists, case managers all rolled into one convenient package.

Which is what I have had to become to care for my child's agencies. I resent caring for her agencies-- it takes my time from caring for her.

Here is a small example of how we find equipment for her needs. Recently we have tried to get a potty chair-- mind you she is now 70 pound eight year old, so this is not a trip to Target or Babies R Us. We have entered into the alternate universe of Durable Medical Equipment, a universe where none of the normal procurement rules apply. 

1. First, I contact her case manager (CM) at Regional Center (one of forty private non-profit contracted by the California Department of Developmental Disabilities to case manage "clients" like my girl. Mostly, they distribute money and try to obscure what services they do actually provide as far as I can tell.) My kid is a regional center client because of her diagnosis. 
   
2. The CM tells us there is a one year waiting list to see the regional center therapist who can evaluate  my child's need. I suggest that is unreasonable. 
3. The CM suggests we see her private doctor. 
   
4. We write a letter to her Kaiser doc request a prescription for a potty seat. 
   
5. The doctor sends us to the physical therapist (PT) at California Children's Services (CCS is run through MediCal) to get a recommendation for equipment. 
   
6. A month later, we see the PT. 
   
7. We fax the recommendation to the doctor, who returns a prescription to the PT.
   
8. The PT submits the prescription to Kaiser for the necessary denial letter. (We are already way over the DME limit for the year with a new wheelchair and leg braces. And, Kaiser does not do potty chairs.)
   
9. Six weeks later, we receive the denial letter from Kaiser. 
   
10. And fax it to the PT, who sends it to a private contracted vendor. 
    
11. The vendor submits the bill to Regional Center. 
    
12. At this point, Regional Center should pay for it, as the funder of last resort (their legal obligation). 
    
13. But since I already applied for MediCal at the request of the case manager, Regional Center denies the purchase and says we have to go to MediCal first. 
    
14. Fortunately the case manager at Regional Center deals with the CM from MediCal. 
    
15. Six months after applying we get an approval for the MediCal case and a temporary MediCal number, which I submit to the vendor. 
    
16. It has now been nine months since we first began trying to get a potty chair. 
    
17. The vendor submits to MediCal, and receives a denial from MediCal saying there is no medical indication for a potty chair. 
    
18. I think I should call my doctor and discuss a prescription for anti-rage medication. 
    
19. I contact the case manager at Regional Center and tell him MediCal denied the purchase.
    
20. He sends an email back explaining that I must now submit both a letter from Kaiser AND MediCal before Regional Center will pay for it. 
    
21. So now I have to write to MediCal and try to get the denial letter that I never received so that I can forward it to Regional Center. 
    

This is the second time we have tried to get a potty chair. I first began this process two years ago.

So, what have I learned? That the state pays a full time case manager at Regional Center and another at MediCal two people whose job it is basically to save money by denying services to my child. That Kaiser pays a claims adjuster aalso to deny services to my child. Three people involved in denying services-- work that does nothing but suck money out of the system that could be going to direct services to kids like mine. And the account manager at the vendor is paid to navigate the same denial of service loop-- another waste.

And it only gets worse when the school system gets involved as a third party denier. It took three years and an attorney to get a speech generating device because everyone wins by denying-- except the child, but who cares about them? 

The only necessary people in this loop are the doctor and the physical therapist. They should be able to write a prescription, sign and affidavit and submit directly to the state. Sure, some fraud might get through, but could that really outspend the huge system that has grown up around preventing fraud? How many potty chairs could slip through before we outspent the salaries of two case managers?

There has got to be a better way. All I know is this: raising a child with a disability is hard enough without the systems that are supposed to be supports making life harder than it is already.

I hope that this is read by Diane Feinstein, Barbara Boxer, George Miller, Tom Torlakson, and Mark DeSaulnier. In fact, I am going to forward it right now.

Right after I call about those meds. And resubmit the two denial letters. And start working on a new wheel chair. And a lift for the van. And...