Proposed Changes for SSI

There have recently been some proposed changes to the way the government determines if someone with cystic fibrosis is eligible to receive SSI. This would obviously affect many in the community, and if you feel that the changes would negatively impact your own situation, I highly recommend having your voice heard. 3 of the most talked about changes are....

1.       FEV1 values based on age/height/gender.  Basically, from what I gather they are lowering the FEV1 value to meet criteria, making it harder to qualify based on lung function. Some people may be “sicker” with even moderate lung function, but they would no longer meet the more strict criteria.

2.       “Episodes of Illness”- currently you have to have 6 “episodes” in a 12 month period, and a hospital stay counts for 2 of those. But they propose to no longer count doctors visits, ER or other outpatient interventions as episodes. We almost always try to treat oral/output first to avoid an inpatient say, and for our “healthier” patients this generally works. Exposes less to hospital environment/cross infections and IV abx which builds resistant bugs. Even an “outpatient” intervention could be home IVs. Even when we are treating outpt, we ask that pts go from 2 to 4 treatments a day including ACT. This has a significant impact on if someone could attend work or school.

3.       If you have chronic infections of bugs like PA, Cepacia, etc that require ongoing nebulized “antimicrobial” therapy IE, TOBI or Cayston or Colistin. I didn’t see anything in there about those criteria.

As one CF social worker who I greatly respect put it,  "I think the biggest changes proposed are lowering FEV and also not counting outpatient physician interventions anymore BAD !!!!". (Also, big thanks to her for providing the three bullet points above)

If you would like to have your voice heard on this matter and/or read the proposed legislation, click here.