Anonymous wrote:Thanks for the suggestions. I had thought of and rejected the insurance company, sheepishly out of fear of drawing too much attention to how much in medical care she's cost them in the last two years. But of course they already know and they could perhaps help--it is worth a shot. I've thought that perhaps a concierge doctor would be good--I haven't had too much luck with getting a replacement for the pediatrician. I'd rather have a doctor just straight up tell me their practice can't handle someone with so many issues then start seeing someone who later tells me he'll only deal with X and not Y and Z (current situation).

I worked for a managed care Medicaid company and we had both nurse and social work case managers who assisted members who were chronically ill (high-cost and high-risk), communicating with them regularly and helping to manage their complex care (finding specialists, helping them get appointments, recommending certain paths like nutritionist for diabetics, etc, checking in with meds efficacy, helping access mental health services, and much more). It was a win-win because it improved health outcomes for patients and ultimately kept costs down for the insurance company because with close and thorough case management the patients had less ER visits and medical crises.
There really was no downside, at least at our company, but our members were poor and vulnerable in general with many social issues that complicated their care, and our nurses and social workers were very caring and empathic - not sure if that is the case with other insurance companies that aren't serving the Meficaid population.
But it's worth a try.

OP--Thanks for that dose of reality! I am not so good at the PITA thing, one reason we just silently switch doctors, sometimes making things way more complicated. or even harder to coordinate. I'll call Children's to see if she's too old or if they have any referrals they give their children wh graduate.

Our daughter uses HSCSN as a secondary insurance, and I have to say that the care managers are hit or miss. There is a high turnover rate (we've had four care managers in 3 years) Better than nothing, I suppose, but I am still on the phone, writing letters, following up, being a plain old PITA, advocating on my girls' behalf pretty much every day of the week.... I agree with the poster who suggested connecting with complex care over at Childrens', it is a great program and we have used their resources in tandem with HSCSN *and* care managers provided through our primary insurance. I guess what I'm trying to gently suggest is that even if you "out-source" your daughters' care management to a third party, you're still going to be heavily heavily involved in making sure everything is moving in the right direction. That's just the way it falls when you have a sick kid unfortunately Best of luck to you and your daughter!

Just looked this up--they provide physical and other therapy, pharmacy, dentistry, and lab hospital services, in addition to mental and medical health and case management. This looks really good and comprehensive. I will definitely be looking into SSI.

If she qualifies for SSI then she can qualify for HSCSN. HSCSN is a carve out from DC Medicaid and they provide case management until the 26th birthday. They are also starting to provide transition services. At 18 she is a legal adult. If you, and she agrees, that she can't make medical decisions independently than you can seek guardianship. You will likely need legal assistance to facilitate this but it may be worth it. Department of Rehabilitative Services also provides some case management.

Yes--absolutely basic. List of medications and doctors--they always ask for that and emergency contact information. I also have a very outline of her medical history that needs updating. I skipped all the MH stuff; I think that should be separate because there are times one doesn't want to share that.

I actually did not know she would be eligible for SSI given family income and will look into. Interesting they have MH case management. It is curious to me that there are services in place for the more needy that those who are better off find difficult to find at any price. Reminds me of when I took my son for a clinical trial at the NIH for a very emergent disorder few practitioners knew about. The main researcher wanted him in because of his particular symptom pattern, and then two more junior doctors were unleashed on me who all but said I was gaming the system to get free medical care when I could clearly afford to pay for it myself. They even commented on how I was dressed! I still rue that I didn't mention my car was thirteen years old. The social worker who was present did have the presence of mind to look shocked throughout the exchange; unlike the doctors she seemed fully aware of how difficult the illness was, how little care for it existed outside NIH, and that no parent who'd gone through deserved to be treated like that. Honestly, one of lowest motherhood points.