So many people ask me how this could happen, so here's a brief explanation... The Katie Beckett Deeming Waiver was created for medically fragile children who have significant medical expense, but do not qualify for SSI or Medicaid. There are three ways to be eligible:
1- The child needs extensive rehabilitation services such as OT, PT, and Speech. Examples of these children would be ones with cerebral palsy, down's syndrome, or autism.
2- The child has known hospitalizations of 48 hours or more scheduled for the upcoming year.
3- The child does not require hospitalization, but has medical interactions that are usually performed by a licensed nurse on a regular basis. These children are often considered medically fragile and have an underlying medical condition. This child must require skilled nursing on a "regular basis".
Ari always qualified in the third category since he had home health nursing since birth. Last summer, we were denied additional nursing hours from our insurance company and instead of fighting this decision, we took it as a sign that I should care for Ari full-time without the assistance of a nurse. This would create a more "normal" home life as he prepared for kindergarten. There are a lot of medical interactions throughout the day, but I cherish every minute of it. It's often hard to juggle, especially at night if Larry is traveling and Liv has practice, but we manage. We stick to a strict schedule and my parents step in whenever we need a hand. (They deserve a huge THANK YOU!!) We've all been so happy with our new normal.
I had no doubts that Ari would be approved again and was shocked with the first denial. The bottom line is we needed nursing to qualify. Most families in our situation have nursing. We are being punished for taking care of our child without assistance. During this period of time, a court date was set to fight the Katie Beckett decision. I was told if we got nursing reinstated, I had to withdrawal my appeal and reapply again to the program. In other words, start all over.
Resigning to the fact that we were going to have to allow someone in our home again to give Ari the care that we are capable of doing ourselves and knowing the financial impact of losing Katie Beckett, we applied for nursing again, which is a major process.
Nursing was approved, I found an agency and they started the "case" (ugh- I hate that word) for Ari. We now have nursing 3 nights a week. The whole family dislikes the disruption to our lives. It's so uncomfortable. Easy things like adjusting his g-tube feed or giving Motrin needs a doctor's order. He has to stop his playdates to get an assessment and they're just... there... all the time. It was different in the past. Ari was a toddler, I worked, and we loved our nurse. Now that he's in school, he wants to come home and play, not be a patient.
So... we canceled our appeal, reapplied for Katie Beckett, and then... received a denial. After all everything we went through, the amount of nursing hours used was not enough to qualify. We needed daily care, not just three times a week. Our insurance would cover more hours for only a short period of time, then we would need a program called GAPP for more hours. The only way to get GAPP is to have Katie Beckett. We are in the nursing black hole. The larger problem is we do not want the nursing we have, let alone more hours.
Larry and I decided it is in the best interest of our family to not have any nursing. So, We are losing financial assistance because we are competent, responsible parents. Something is very, very broken here.
The impact of losing Katie Beckett is monumental to our finances. It's our worst case scenario come true. Our primary insurance covers 50% of durable medical equipment. Catheters and feeding supplies alone are $3,700 a month (bill rate). This doesn't include appointments, medications, procedures, or hospitalizations. We don't know what our portion will be yet (it's harder to find out than one might think), but it's going to be financially devastating.
We talk about me going back to work, but Ari's care is so intense and unpredictable... he really does need me. As it is, I'm never far away from him, even when he's at school. I'm not sure what we'll do... just survive, I guess. We still need to do things that typical families do for the sake of sanity... occasional vacations, dinners out, etc... we don't want to be judged for doing these things because we have medical expenses. At some point, we all just need to LIVE... enjoy our families and friends and accept that there's a path for all of us... we just don't always know which way it's going to bend.
