overwhelmed by entitlements

I just have not been able to write lately. I have sat down so many times to update my blog and everything wants to come out at once-- suddenly the pipelines are blocked. I think my synapses are fried. I had an interview with IHSS (In Home Support Services, part of MediCal, I think? Such a big agency I just have not taken the time yet to learn the system). Any way, they sent over this very lovely young social worker whose job it is to determine whether our family needs additional resources to care for our daughter at home. She began with a question that just froze me:

What is extraordinary about caring for a child like Emma who has Rett Syndrome? 

At first, I could not think of anything, but as she began asking more specific questions, it began to seem like everything. And so much is invisible. I am not complaining here but as I have gone through my days since then, I have noticed how much of my conscious time is committed to monitoring my girl. ANd monitoring those who monitor me, monitoring her. My new thought is this. There are several ways one could find out that do not involve full time case management. Given her genetic test and diagnosis, you could look it up. Or, the best way to get a sense of what Emma needs help with is this experiment: tape your mouth shut, then tape your thumbs together. Now go through your day. For as long as you can. When you want to bang your head and scream, you can stop the experiment. Then remember: she can't. Nor can we. 

Here is what I have figured out: for school, we have to answer yes to as much as we can, otherwise they will consider her mentally retarded and treat her as untrainable. For MediCal and Regional Center, we have to answer no to everything otherwise they will consider her highly functioning and reduce as much support as they can. And everything we say is true.

Here is my current worry list, maybe just to download it will clear my mental agenda: 

• Emma needs: a new chair, new leg braces, a lift for the van. That means a huge logistical nightmare with Kaiser, MediCAL and Regional Center. If you read my post about the potty chair, you might understand why this drives me literally to tears. 
  
• We are traveling by plane this summer to the farm to see family, and I have to arrange wheel chair, changing planes, and getting liquid food supplements through TSA before we go. That is end of June, so I am late getting started. 
  
• Emma's trazadone is not working so well, and we need to switch meds. This requires a neurology appointment and careful coordination so we are not switching mid trip (above) should I start now or wait. She is waking up every day at 4AM- I wish we could start now...
• She needs new clothes. This is a major ordeal. I need to plan a weekend day when I can have a babysitter for her sisters so her dad and I can go with her to the mall-- it takes two now. 
• I need a lift for the van. 80 lbs is past my limit.'
• We need to go to the mobility dealer and see what our options are. Crap- our van has like 120,000 miles on it. Do we need a new van too? How are we going to do all this. 
• we have an appointment for the new chair fitting on May fifth. I have to put in for a day off. Husband too. Oh my gosh, will we have a new chair for the trip? AUGH- we have to rent a full size van -- oh, it won't have a lift. I wonder if she will fit her carseat still. 
• we need a new ramp in the back yard, it is too steep and she just fell down it. 
• she needs a ramp and deck around her make a wish tub.. we can't lift her in anymore. 

So it is the little things, feeding, changing, reading, playing, hanging out, watching for seizures, etc. But also the big things. 

And frankly, who has time to answer ten pages of questions about what she can and can't do? From three different case managers at three different agencies. AND-- her doctors and teachers also have to respond to the same inquisition. 

We are so afraid of fraud that we are spending more on fraud prevention than on people with disabilities, I fear. 

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...