Wednesday, September 4, 2019

Tyler Update...Sort of

It appears that Tyler has come out of the weeds somewhat within the last 2 weeks.  I would say we have gone from the fescue to the light rough at the moment.  I will be receiving a more detailed update tonight, which I will post later.  At church he still appeared to be unfocused but smiling and a little interactive.  

The current frustration is trying to figure out WHY this has happened to him.  That question alone is difficult enough, but an equally frustrating hurdle seems to be getting the right people to help him in the first place.

Something I heard from the beginning has turned out to be so true...the treatment options become much more limited the older that Tyler gets.  The ironic thing about "aging out" of certain services, is that mentally Tyler hasn't aged at all.  Even physically Tyler is nothing near a 27-year-old.  And yet this is the criteria which often determines treatment.  Just this year alone he has lost his Neurologist of 20 years because he is now an adult, he was denied an appointment with a psychiatric group because he was too old, he lost my insurance because he turned 27, and we are struggling to have a consultation with an out-of-state doctor because he lost my insurance at age 27 and only now has state funded medicaid.  

Don't get me wrong, the folks I am talking to are normally WANTING to be helpful, but they entire system is just so broken.  Facilities have to worry about getting re-reimbursed, whether they are doing something that would be frowned upon by insurances or medicaid, liability, limited numbers of doctors, and limited slots to schedule patients.  Most of these mental health facilities are also unable to take new patients, or are scheduling months and months in advance.  

The need for services is far exceeding the supply of resources.  This is scary because both factors are going the wrong direction.  The need is growing and the resources, which are already stressed to the point of breaking, are simply being stretched more.

Its easy to throw our hands up and say that the system is broken.  Obviously this is true.  But breaking it into little pieces and fixing them one at a time is how we can make some progress.  There are too many pieces to lump it together and call it "the system".  I will name just a few broken pieces:

  • Not enough pay or training for caregivers
  • Lack of state and federal funding
  • Lack of facilities willing to address the needs of disabled adults
  • Too many people allowed to abuse the current system
  • Lack of education for those family members raising a disabled individual
There is no way on this or any other planet that we can fix all of these issues at once.  BUT, I do believe that an initiative should be set to address one at a time. 

How do you eat an elephant?           One bite at a time.

Be well and God bless.    Tom

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