There are, as you might guess, state and private agencies who put great effort into convincing the public at large that they truly care about the people they serve and are working very very hard to meet their needs. Peel back a few layers of public-relations spin and you will oftentimes find nothing could be further than the truth. Too often the motive is to look rather than do good, and raise a little money while you’re at it.
A few people I work closely with are beginning to look deeper into the activities of a non-profit agency. As those of you who read this blog already know, the NYS Department of Health is a problem in nearly every sense of the word when it comes to the lives of brain injury survivors in the state. However, in fairness to the DOH, it does not fall into the category of an agency who tries to look good. It makes little to look good at all because it is hard to determine who is actually holding them accountable. They are an arrogant renegade state agency if their ever was one. The way they treated the TBISCC (Traumatic Brain Injury Services Coordinating Council) earlier this month reeks of arrogance.
The TBISCC, to its credit, has asked the DOH to speak on the problems with Medicaid Fair Hearings being faced by brain injury survivors on the state’s TBIU Waiver because the DOH last year gave a verbal directive blocking their case managers from advocating for them at the hearings. The day before the TBISCC’s meeting on April 14, the DOH notified TBISCC Chair Michael Kaplen that no one would be available to discuss the matter.
Now, this writer and others wrote to the DOH’s Cheryl Veith asking her to put us on a several years old email-list that tells the public when the TBISCC is having its public meetings and sends out agendas and minutes when they become available. Apparently the DOH has decided the mailing list was too friendly. Ms. Veith responded with “We have recently implemented a process whereby announcement of scheduled TBICC meetings, minutes of the last meeting, and a draft agenda for the next scheduled meeting will be posted for the public to view on the Department of Health website at: www.nyhealth.gov/events/meetings/index.htm.”
Some who live with brain injuries live with memory deficits, processing challenges, and more. Wading through a website can be tantamount to climbing Mt. Everest without oxygen. This fact has been shared with Ms. Veith and other DOH officials like Deputy Commissioner Mark Kissinger, Mary Ann Anglin, Lydia Kosinski and Carla Williams, all of whom will do their level best to convince anyone who crosses their path that they really really really care about brain injury survivors. So far, a large number of survivors and their families and healthcare professionals who work hard to help us think that’s bunk.
Reinstating the email list is, to use a phrase right out of the ADA, a reasonable accommodation for those of us who live with brain injuries. I doubt they will reinstate it because for some time now there are two words no one links to the NYS DOH: reasonable and accommodating.