Dear HoG: Skilled Nursing Facilities

Horizons in Hemophilia, September 2012 

Dear HoG: Will a skilled nursing facility (SNF) try to avoid admitting my father because he has hemophilia? I have heard rumors about this being a problem for the bleeding disorder community and I don’t know what to think.
-Concerned Daughter

Dear Concerned Daughter: This is a great question that is becoming more common now that people with hemophilia are living normal life-spans. There is truth to the rumor that admissions can be extremely complicated and sometimes nearly impossible for people with hemophilia. Sometimes the staff at these facilities are worried about such things as factor infusions. But most of the problems have to do with the high cost of factor medication and how facilities are paid. Medicare Part A, B and D, as well as Medicaid, pay for different types of care.

Here is an example of the extremely complicated funding through Medicaid and Medicare: 70-year-old Joe is covered by Medicaid and Medicare and is in the hospital following a stroke.  If Joe needs to go to in-patient rehabilitation after leaving the hospital but before going home, Medicare will pay for the rehabilitation. But, if Joe leaves the hospital and goes to a nursing home for custodial care instead of going home, Medicare will not pay for the nursing home.  Medicaid would pay for the nursing home in that situation.  

Custodial care at a nursing home is less specialized and is typically covered by Medicaid once other resources run out or if the patient already has Medicaid.  Custodial care is mostly non-medical and has to do with helping the patient with daily tasks such as eating, bathing and dressing. But nursing homes are not reimbursed separately for the high cost of factor or for any other types of expensive medication. Instead they are given a lump sum to pay for all of their residents’ medicines. So, yes, they fear the cost of factor. There are ways to handle this, but many facilities don’t realize there are some options. And neither do most families.   However, HoG social workers are very knowledgeable about all of the options and know a lot about Medicare and Medicaid. 

HoG social workers would like to be contacted immediately if someone in the bleeding disorder community is seeking admission to a nursing home, skilled nursing facility (SNF), rehabilitation center or assisted living community. They can provide advocacy and education.

In addition, Marla Feinstein, Medical Information and Policy Coordinator for the National Hemophilia Foundation, has been hard at work for years gathering information to present to congress about this problem, particularly as it applies to SNFs. (The difference between assisted living, a nursing home and a SNF has to do with the amount of care being provided.) Ms. Feinstein’s focus has been to push for changes in the Medicare funding law, but she needs your help. She has been gathering stories to help raise awareness on the national level. And it is also important that you contact your congressional representatives directly to share your stories and push for change.

If you'd like to know more about paying for nursing home care, please read this blog posting.