Medical case manager for older teen?

[Anonymous]

Have older teen with multiple health issues, some undiagnosed. Am exhausted with trying to schedule appointments, coordinate care with multiple doctors, research next steps, and followup on tests and am really ready to outsource this to someone else. Are there people one can hire to do this? If so, any suggestions? Live in NW DC.

[Anonymous]

many of the larger insurance company's have complex case management. it can be hit or miss, but I've seen some do fantastic work coordinating care and even saving patients lives. they are usually nurses. have you pursued anything with the insurer? I know this isn't exactly what you are looking for, but it might be worth a shot.

another thing is finding a really great primary care doc. someone to really manage the care. you may want to do one of those concierge practices where they'd be willing to really be a point person and give you a lot of legwork.

[Anonymous]

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).

[Anonymous]

I would start with your insurance company.

[Anonymous]

have you thought about the complex care program at Children's?

http://www.childrensnational.org/departmentsandprograms/default.aspx?Id=100014&Type=Program&Name=Complex+Care+Program

[Anonymous]

Wow! That looks terrific! I haven't had much luck with Children's in the past (very long wait times) and she may be too old (over 18) but I'll try giving them a call to see if they have ideas or referrals.

[Anonymous]

Well, this might be a bit "out of the box" but there's a whole industry of geriatric care managers who do this very thing for the elderly, perhaps you could check with them to see if they could manage a teen's medical care.

Other than the fact that the geriatric managers handle an array of things that you wouldn't need--assessments, caregiving arrangements, etc--the rest of the administrative/management tasks seem like they'd be the same--ie, scheduling appointments, tests, etc.

Couldn't hurt to touch base with one of these professionals. Look up the Senior Beacon online and there's a directory of providers.

Very sorry to hear of your child's medical challenges. I hope they are all resolved soon.

[Anonymous]

http://www.eldercc.com/our-work/care-management/

[Anonymous]

In our area in Virginia, there is something called Care Connections which helps families who have children with complex medical needs "transition" from children to adult services. It would seem that your daughter might need a good internist as her PCP who is affiliated with a hospital practice system so that referrals could be made within the actual hospital building to at least keep her from running around to multiple sites in DC.

I would assume that it is also important to consider her future insurance coverage in her mid to late 20s when she could no longer be covered under a family plan in terms of what insurance company she is most likely to work with and whether her health care team would accept it. This would reduce a major disruption later on in her life.

If mental issues are a part of her health care scene then if it is possible to find a doctor(s) in that realm also associated with the same hospital it would be good. If it is something like a cancer which requires a lifetime of follow-up then a doctor with that kind of research interest is also a consideration. In many regards, I do thing "a navigator" for this age group would be a great job for someone to take on. A friend in the DC area is so tired of being the "go to" person for her young adult daughter - who in many ways is still "a real pain" to deal with and might be more willing to do sensible things if there was a 3rd party. Right now "Mom" is the one who has the time to make the doctor and insurance co. calls and research care options as daughter does not have a flexible job.....

[Anonymous]

More great suggestions! Glad to hear I'm not the only one tiring of all this and wishing for a navigator. It is actually harder as they get older--I have come to really dislike HIPPAA as it makes it harder for me to get medical records since she's over 18. It's difficult enough to get her to medical appointments (doesn't drive owing to seizures), and now I have to take her in person just to sign releases. When she was younger I just had to call and records would be faxed over. I also have gotten lectures from doctors that she has to take more responsibility for her health care; that didn't happen when she was under 18. It's not that I disagree, but just because someone is over 18 does not mean that they have the perseverance to make the 20 or so calls it can take between doctor's office, insurance company, and radiology center to get an MRI done. She does have mental health as one of her issues and her psychiatrist is hospital affiliated. I tried once to get her to a PCP in the hospital system and they offered her a resident. Didn't think how that made sense for someone with multiple issues, particularly as residents don't tend to stick around so I turned down the offer. Perhaps I'll try again...

[Anonymous]

Medical CM here. I don't know where you are located, but here is info for DC
http://www.dchealthcaretransition.org/

[Anonymous]

Medical CM: Interesting site--looks like it is still under construction. But there is contact information so I'll try that too.

[Anonymous]

I posted earlier about the navigator concept. I would try and get a release for he psychiatrist, too, since you may well see a downtrend in her that she does not and may fine it important to share with her doc.

Our daughter who is married with twins finds Christmas/winter a hard time of the year and last year things just did not bounce back as they should. Out of the area I just got so frustrated and concerned with things that I shot an email to her psychiatrist's office 15 min before a scheduled appointment. I never got an acknowledgement and only stated what I saw personally and heard had transpired and asked for a reevaluation of meds. Somehow it did the trick and 2mg of the right stuff just snapped her back around. The point is that with MH issues, the individual just may not have the understanding of what is important to share with a doc and while physical change of symptoms can be picked up on, mental health not so much. One email helped four individuals including 2 young children and 1 frustrated and weary husband get back in sync as a family. I HATE HIPPA.......

You are quite right to get the releases, and it sounds like you are a great and supportive Mom who over time can help your daughter Transition to taking over her health are. I imagine she has a number of other areas in her life which she is also dealing with as far as next step in terms of further schooling, a job etc.

***********************************************Original OP request of you I happen to be very interested in Transition and am developing some documents for teens in our area of Virginia. I would appreciate some input in terms of what things a parent with a teen with mental health issue and/or a chronic health or complex health condition has found it important to be aware of. Or what kinds of issues arise that at least could be listed in a possible checklist??? Our daughter was a bit older when things came to the surface and she also dealt with a serious cancer before things settled down.

Thanks

[Anonymous]

I have emailed her psychiatrist--she's a bit snippy about it and I had to calm her down about me second guessing her medical judgement when she ordered a quadrupling of a dose when she newly took her on. Turns out DD gave her the wrong milligrams from her previous doctor and the psychiatrist thought she was just doubling. In any case, I agree just being able to email concerns is a great thing.

I am not sure I have done the best job of transitioning, but here are some things in no particular order:

1) Let them know if they are hospitalized they'll be asked for an advance directive--DD freaked a bit when it was explained what it was.

2) If you have a health problem that needs tending here is your order: 1) PCP (or if clearly specialist related, the specialist), 2) urgent care, and 3) emergency room. If you have any doubts call the nurse's advice line on the health insurance card. Personally, I always call them first if I am debating whether the ER is appropriate or not. When to call the ambulance is sometimes obvious but other times not. I've had the insurance nurse tell me to call one and haven't only to get to the ER and have them say I should've called the ambulance.

3) Seven day a week pillboxes are a must (she needs two sided for am and pm). They should be filled up the same time every week. (I confess I don't quite trust her to do it right; last time she did it, she put in only one-fourth of her epilepsy medication and had a seizure on the third day.)

4) If they tell you you have a choice of going to the psych ward voluntarily or involuntarily always go voluntarily.

5) If you have two insurances always tell them to make sure they get the primary one right. She's heard me do this enough times it almost automatic for her. Believe me, you only make this mistake once. Also, they should know their insurance lab; again a mistake you only make once.

6) Know the difference between signs and symptoms--doctors trust signs more than symptoms because they are more objective. Keep a daily record of both (not successful yet). I am slowly educating her that her recounting that she has off and on 104 fevers to the doctor will be far less convincing than a written record. Something I am going to try--she recently got an Iphone (late technology adoptors) and I am going to have her download Symple Symptom
Tracker into which she can put all her symptoms as they occur.

7) Try to understand where doctors are coming from and what their reactions are to things you say. Once again a fever example: She has recorded fevers of 105.8. I have explained that this does not sound credible to doctors and if she's going to say it she needs to add something like "But I think the thermometer gets weird at high temperatures." She has had the hardest time understanding that what she sees as truth here is not helpful. But we've made progress--the other day I was with her and she recorded a fever of 105.5, which came down in an hour to 104. When we had to go urgent care because her PCP didn't phone in prescription refill, she told the doctor she'd had a fever of 104 (victory!). He was seriously concerned and gave her a flu test on the spot. No need to go to 105 to get their attention!

8) The importance of the presenting symptom. There have been ER visits that have a mess because she pours out all her various symptoms, along with the one that brought her there, and they conclude she is engaging in drug seeking behavior. When I take her to the doctor I get her to agree on the top three things for the visit and the one that really bothers her, which will take precedence. (This doesn't always work; for some reasons doctors always get excited if they find out about seizures and it can be hard to get them to focus on what you want them to. Her PCP has even told her it'll be hard for doctors to think about treating anything else until seizures are under control. So take your medicine!) For the ER, you need to isolate it down to one or possibly two presenting symptoms. At another ER visit she complained of both severe abdominal pain and back pain and they ended up doing a lumber MRI and found nothing. A week later she was back with more severe abdominal pain and they found a gynecological problem--which clearly had been present at the previous visit--that needed immediate tending to.)

9) Be upfront that you have a mental health problem and if you get a chance say something like: "I have anxiety and understand it well but what I am coming to you for today feels nothing like anxiety."

10) Know your family medical history. She can reel off her immediate family and aunts and uncles--not sure she has the grandparents down (all dead long before she was born).

11) Get copies of all your tests and keep in a file. (I am still doing this one.)

Will let you know if I think of others. happy to help someone who is less than entranced by HIPPA....

[Anonymous]

I think I would add for any one with a disability for the parent to try and type up a record of the disability history in a brief fashion of incident or history of provider care and what for, location, contact information and dates. Medications prescribed or major procedures such as surgery.

This detailed information could be kept for dealing with government benefits which want details. But it could be streamlined for a medical history and current emergency contact information included in case a sudden health care crisis comes up.

I will copy and save as a good start for one. I would think you are aware that you can apply for SSI benefits for our daughter now that she is 18 as this would give her a monthly cash benefit of $710 or so a month tax free. It would also establish her immediate eligibility for Medicaid Health Insurance assuming she would have not more than $2,000 in countable assets in her name. If she can go onto school or work it might just be somethng to keep in mind for the future. You can work and still collect SSI and keep Medicaid.

In your daughter's case, even if she keeps family health insurance as primary coverage, I am fairly sure that she would qualify for MH Case Management services which Medicaid - if found eligible even as a secondary insurance would cover. This might be a resource for you to use in finding area resources for now and in the future which she might need. SSI and Medicaid are not based on your finances, but her as a "Family of One" at age 18.
She also may well be eligible for Vocational Rehab job support services.

Thanks for the information. I know the ID world very well, but MH I only know a bit as our older daughter did straighten out and with some blips is now married, a mom, the major breadwinner with a flexible government job and the mom of two young children. Her husband is a good balance for her life and more Mr. Mom. Still it is always with you as a parent that she will be healthy. If you can give her the time, find the right MH team, then I do think maturity can improve things.