Tuesday, July 13, 2010

Change is Brewing II

Thanks to Cathy’s fabulous comment on the blog I posted yesterday I wanted to follow up with a bit more detail of my story and experiences regarding CCB stuff. Why? I think it is an extremely important part of my family’s everyday life and will continue to dictate Ava’s services through out her adult life. When I am in the community moderating support groups, getting education on the system or receiving services I find that the MOST misunderstood item out there is this very topic (which includes Medicaid).

I will preface that I am an accountant by both education & years of experience with a passion for Cost Accounting. I know that this is a huge asset to quickly navigating the system. If you would have told me a good foundation of governmental (or fund) accounting & policies and how the functional world has to make both ends come to fruition would be my best family tool back then, I would have laughed. Often times (maybe most) policy is made with good intentions AND elections in mind. Unfortunately that is not the way that good policies which should be fairly easy to implement and/or understand are made.

Perhaps I am trying to get you to ponder this…Is it better to feed a man or teach him to fish? AND those who are fairly good fishermen but encounter a natural disaster that is outside of their control, what should we do to help them get back to fishing?

*Should we (the great democratic citizens of the U.S.) support middle-income families so they do not end up low income families with even more societal needs? I am Ava’s C.N.A and it has changed our lives and helped open up doors for many opportunities for us to make our family work much better.

*In the realm of funding and private insurance should a DD child ever be denied the security of services as a secondary (HCBS waiver for example) to private insurance? In reality most of us have minimal control over our family’s health insurance policies, especially when provided by employers. Then there is this whole pre-existing thing which they may not be able to deny you coverage but it doesn’t have to be provided at a reasonable cost.

*I also think that the Part C to Part B transition is a bit more complicated than ‘the school system will now provide services’. That is great but they only provide services appropriate for LEARNING in that environment and this is not always practical or even plausible. This is where we as parents become full time coordinating care providers, chauffeurs, therapist, etc. It’s hard to validate how complicated life gets over night but somehow that is where you end up.

*What is a reasonable salary to re-distribute government funds already distributed? I don’t think someone directing a CCB ran from around 94% state funding deserves much of a salary, if a position even. I feel like this is where we need to wake up & smell the roses; decide how many figure heads not involved in direct service process are needed. I don’t believe that the services should be so drastically different based primarily on the county you live in and the willingness of your CCB to make efforts to find LOCAL community support.

I am not sure if I think that case management and servicing provide a conflict of interest either. I do however feel that the state should provide more education and guidelines for the boards to follow. I even think a place *gasp* like the world wide web would be a good start to providing INFORMATION on who/where these services are provided across the state. Maybe even a phone number to better help you, help yourself is an idea worth investing in. It’s probably pretty cheap and sure would have saved me hours of googling, phone calls and frustration.

I totally agree with Cathy’s funding ideas and can attest that Ava has suffered from the lack of all things Cathy suggested as changes.

I also do not think CCB’s should have to ponder questions like this…Do we spend $800 on anti-psych meds this month for an undocumented adult (whom as a child received private insurance through the father’s work) whom lives with his citizen father in our community? Is your answer no? IF so, how does the board answer to the community when this individual harms others? Whose problem is this?? This is one of many realities that I have experienced volunteering to allocate FSSP funds at my CCB.

It’s a complex, broken system that can not be fully exposed in even hundreds of blogs, letters to the editors, etc. I think that Medicaid / Medicare in general is very misunderstood part of our society. Your CCB is certainly not going away so do what you can to make it a better, more understood place; even if that means disliking them enough to demand something different.

I'd love to learn more about your county and how they provide your child's services. If they are good enough, maybe I'll join you!


ferfischer said...

AAAAAAH! You're making my head spin around. But seriously, it sounds like you've found your calling.

TherExtras said...

I'm a big believer in working local - so I'm not sure if I will have anything meaningful to add re: CO.


You correctly place these issues in the context of Medicaid and IDEA - that are not completely local. "It’s a complex, broken system that can not be fully exposed in even hundreds of blogs, letters to the editors, etc." It is easy to get discouraged.

Just this morning I commented on a 'warrior mom' blog - not every parent can do the warrior thing.

I wish I could draw on your background expertise, more and specifically. I did a whole series on healthcare insurance last year and it is now linked in a box in the middle column. Would you look at those posts, Amanda? I want to know what you think. No pressure, though.

Thanks, Barbara