Home Health D.C. area for Bowel Management

[Dylan'scarebear]

Hello, I am new to the CareCure Community but in need of some info/help and think this may be a good place to get it. My son who is a C6/7 has been awarded a Congressional Internship for this summer in D.C. We live in Tennessee. Currently he receives home health nursing services which are paid through his TennCare benefits (Medicaid). I have contacted them to see if he could receive services in D.C. and was told no. I contacteed TennCare Solutions to get advise on what could be done and was told we needed to get an order from his physician for out of network benefits. This must be processed first through our primary insurance (Cigna) and then through TennCare. I anticipate denial but once that has happened TennCare Solutions may be able to help us. I need to know what agencies are in the D.C. area that might work with us on this problem and ultimately provide the services he needs. I have also been told by another parent that we might consider transferring his Medicaid to D.C. when he is there in order to get services. Is this possible and if so how is that done? Dylan will be there for a minimum of 2 months. Finally he will also be needing personal care assistance. Presently these services are paid through Vocational Rehab. We hope to have that arrangement continue when in D.C. but don't know if that will be the case until after we go through the red tape of getting college credit assigned for the experience. They are presently only paying $12/hr. I suspect that will be all they will pay when he is in D.C. What would the services cost there? I know this message is loaded with quesitons. I am sorry, I am really lost but determined that this opportunity will not be lost due to care issues.

[SCI-Nurse]

If his Tennessee Medicaid or your private insurance will cover this in DC, that is the way I would go. A temporary relocation would not justify loosing his Tennessee benefits, and if DC is like most states, he must be in the district for at least 30 days before he can even be eligible for services there. I would not assume that he would be eligible for all that he is getting now though as this is an unusually generous benefit. I suspect if Tennessee does continue to cover him that they will want to contract with specific agencies only. You could check with the National Rehabilitation Hospital in DC for some recommended agencies. Don't assume that they work the same way though. In my state, agency is rarely approved by IHSS; the person must hire their own PCAs using approved IHSS funds at the IHSS rate ($8.75/hour)

How many hours of care does he actually need? Does he actually require skilled care (RN or LPN), or is this PCA level person care primarily? Many people at his level are totally independent in their own care. Can he take on more and learn how to do more for himself prior to the summer? Most of my clients at this level do their own caths, ROM, skin care, dressing, transfers and cooking. Many also do their own bowel care and bathing. Alternatively a family member may need to travel with him for this short stay and act as his caregiver.

(KLD)

[Dylan'scarebear]

He is two years post injury and is probably more of a C5/6/7. Much of his medical documentation identifies him as a C5/6 but he prefers the identification of C6/7. He has worked hard and probably could work harder but time is limited. He returned to college fulltime in the fall after accident in January and was still getting therapy. His biggest challenge has been ongoing UTI's every 6 weeks since coming home from Shepherd rehab. These truly zap him. Independent bladder management has not been possible due to condom catheter. He recently had the bladder augmentation surgery and now has no bladder leakage. He has begun the effort to independently cath and has hopes that he will be able to do this by the summer. Management of the supplies is difficult but with determination I think he will work it out. He has been assessed as needing 59 hours care a week. Nine of these hours are skilled for bowel program. PCA can not do skilled care here in Tennessee. He hourly rate of $12 will be changed to $10 in the fall but was allowed initially because agencies were charging $16 so Voc compromised due to there being no time to train a privately hired assistant when he made the transition to a college away from home. He is able to transfer with standby assistance to/from wheelchair but can not do so to his shower chair. Problems here involve brakes not keeping chair in place and yes we have tightened etc. He can dress/undress upper body but is very challenged to dress lower body. The time/energy involved to do so is profound. Meal prepartion is not even on the slate of activities to accomplish at this time. I bet I sould like I am making excuses and I guess I am but I feel he has truly accomplished a lot since coming home. Pain in his neck and UTI's have kept him under the weather yet he continues to attend classes and has completed three semesters and is in the fourth.
What does IHSS stand for? I will contact National Rehabilitation Hospital in DC for recommended agencies. Any other assistance/feedback on this issue is apprciated. Thank you!

[SCI-Nurse]

IHSS is the program we have in California for attendant care for those who are low income. They pay $8.75/hour and you must find and train your own PCA. With an injury such as his, they would probably authorize 4-5 hours daily total.

I would not assume that you can get comparable (very liberal) services in Washington DC to what you have in Tennessee. As I said, you may need to have some alternative plans if it turns out he is not eligible for DC care, and if Tennessee will not pay for his care when out of state.

You can get some information about Medicaid and benefit programs in other states here.

http://www.kff.org/medicaidbenefits/index.cfm

Not sure if he will be actually living in DC or in Maryland or VA, so this will also make a difference. I know a number of people in chairs who live in that area (they work at the PVA headquarters there) but none who actually live in the district. Most commute using the Metro from MD or VA. From checking on this site, it appears that little or nothing is provided in VA, so he may do better in MD. DC is in between, but none cover the amount you get in Tennessee.

(KLD)

[This message was edited by SCI-Nurse on 02-25-04 at 03:10 PM.]

[Dylan'scarebear]

He will be staying in D.C. at George Washington University. I anticipate a call call tomorrow from insurance case manager regarding home health referral process. The first step will be processing the doctor's order to see what if any approval can be obtained for services. This order is specifically addressing skilled care needs (bowel program). Any information regarding a specific agency that is responsive to and knowledgeable regarding SCI there would be helpful. Thanks again.

[kip57]

Here you all go please excuse all my typos sorrriiieeee........202-884-5617 THe Childrens Hospital Washing ton,DC and here also is there web addy:http://164.109.176.237/
They turn no one away reguardless of income!

[Dylan'scarebear]

I may be closing in on getting funding for assistance. Hopefully by the end of next week I will know. Does Children's hospital work with adults? I may be looking for assistants. Dylan's Voc couselor is trying to network with Voc office there for names. If you have any and are willing to share please send them. Thanks
Originally posted by Kip57:

Here you all go please excuse all my typos sorrriiieeee........202-884-5617 THe Childrens Hospital Washing ton,DC and here also is there web addy:http://164.109.176.237/
They turn no one away reguardless of income!

[Dylan'scarebear]

I have just been contacted by our insurance case manager who tells me that before home health can be approved we must find a doctor in D.C. who will prescribe the care plan for my son's needs. My son will be flying into D.C. on or about 5/9 and is due to start his internship on 5/10. His regular bowel program is M/W/F mornings. In other words he needs care in place before getting there. Anyone know of a doctor that would be willing to interact with our doctor here to get this care prescribed so that my son will have the care he needs in place before getting to D.C.? The case manager has mailed be a very long list of doctors to call. Our physician thinks we should see what Frist could do to help. That is a drastic step but may be the one I have to pursue. Please feel free to email me personally. lpnedge@bellsouth.net. Thanks!

[KLD]

Contact the SCI Clinic at the National Rehabilitation Hospital http://www.nrhrehab.org/ for a referral to a SCI physician who might be willing to do this.

Without seeing your son first though you will be unlikely to find a physician who would just give an order from info on the phone. I would suggest someone who knows his care travel with him and stay with him until this can be arranged, and be prepared to provide his needed care for a few days. That person should also help teach the agency nurse, who probably will NOT know what to do for bowel care.

[Dylan'scarebear]

[QUOTE]Originally posted by KLD:

Contact the SCI Clinic at the National Rehabilitation Hospital http://www.nrhrehab.org/ for a referral to a SCI physician who might be willing to do this.

Thank you! I will follow your suggested path. I have already sent an email to AAPD two days ago telling them I would go in with my son for the very reasons you suggested.