I received a notice today that my current facilitator is going to terminate services for us effective July 1 because we do not agree to the new visit frequency they are requiring. We have been using them since 2011. We live in an area where agency providers are not realistic. There is no public transit here and the state allows for such low wages that there is no incentive for some one to drive all the way out here.

The agency we have used as a facilitator started out with annual visits (I am assuming to make sure that he is receiving the care he needs). Last year, she told me that the state was requiring visits at least every six months. I thought, OK no biggie. Now, she tells me that the agency is changing their policy that all their consumer direct clients will be visited monthly.

This agency has been anything but professional but it worked. An example, last month (for semi-annual visit), we had an appointment for 2:00 PM. My son is not a morning person an prefers to sleep all morning and stay up until his dad gets up at 3:00 AM. This works for us and we work around it. Her office called me at 11:30 to tell me that her previous visit cancelled and she was on her way and would arrive in about 20 minutes. Needless to say, my son was sound asleep and I had to tell him that he did not get to shower before her arrival as it was in 20 minutes. He had to get up and in his chair and dressed NOW. He does not do now well. We live by the calendar and the schedule.

Before getting this letter, I started shopping for another facilitator. We have had wonderful success working with the local community college nursing program for caregivers. We attended graduation last week for his first caregiver who is now an RN. She helped with selecting her replacement (same program-3 years behind). What the few that I found that provide this service have told me is that the state requires visits on a schedule of 30, 60, or 90 days. The schedule is mutually agreed upon rather than based on medical necessity. I do not understand this.

It appears to me that the outfit I have been working with no longer wants to provide consumer directed services because they are not as profitable as the agency directed.

We have been fortunate because my son is in better health than he has even been since his injury. He is taking fewer drugs, working toward walking, working to greater independence. How can they morally justify billing the state for more visits just because they can? Does this behavior not reduce the dollars available to those who really need it? The dollars available for these programs are not unlimited. Taking advantage of the rules really angers me. To think that some one could be denied benefits because the budget is spent, really pisses me off.

I guess that on Tuesday, I will call my way through the list she sent me (how old it is I do not know) in the hope that I can find and engage a new facilitator before the end of June. Any suggestions anyone has on how to find a professional, ethical, facilitator would be greatly appreciated.--eak