Whether you are intentionally blocking medical treatment or you are doing so because you are incompetent, it is cruel and inhuman treatment, particularly when the treatment is prescribed by the doctor and wanted by the patient. When it’s the New York State Department of Health blocking the treatment, heads ought to roll.
As I mentioned in an earlier blog post, “Those close to me are beginning to think, with some justification it seems, that the New York State Department of Health is not only purposely dragging it’s feet signing off on a life alert and some assistive technology its own RRDC has approved for me, but is, in fact, preparing to boot me off the state’s traumatic brain injury waiver.” I went on to say that the jury was still out for me but after a careful review of emails ranging from February 2010 to October 23, 2010, it is clear the concerns of those close to me are on target. The DOH behavior is either intentional or it is incompetence.
If it is the latter, as many think, it means there are people with brain injuries in this state who are enduring the same kind of neglect I am.
A Review, an Anecdote, and the Timeline
My brain injury was sustained in 1984 when I was held up and shot in the head at point blank range. The bullet remains lodged in the frontal lobe of my brain with bone spray throughout the left frontal and temporal lobes. One of the things I’ve learned over the years both from living with the damage and from working in the field of brain injury for more than 15 years is this; the role the injury plays in one’s life changes over time. For the past six years or more I am unable to work a full time schedule of any kind, fatigue has become that much of a factor. Moreover, my sound sensitivity has become very pronounced over the years, so much so that I will often use a fan or an old white noise machine so I can sleep, read, write, at times concentrate on a conversation.
In addition to this, my health has changed. I have a heart condition called a blocked left bundle branch. The left and right bundle branches are your heart’s pacemaker. When one becomes blocked, it is not always clear why, it never becomes unblocked. Research says a blocked left bundle branch is potentially the more problematic of the two. In addition, I deal with asthma, PTSD, and an on again off again fight with depression.
At any rate, all of the previous realities, along with the fact I live alone in a rural area, led me, along with my case manager, doctor, therapist and loved ones to conclude I would be wise to bring two forms of assistive technology into my life: three white noise machines so they can be kept in various areas of the house so my quality of life and ability to comfortably function would improve and, of critical importance, a life alert, so in the event of a medical emergency I can get assistance with the mere push of a button.
Several years ago I was meeting with a group of brain injury survivors, there was about 20 of us. One of those in the group, a friend of mine I’ll call Terrence, had, like me, sustained his injury from a gunshot wound to the head. Terrence and I were facing each other, each sitting at one end of two adjoining tables. Someone raised the question of what we would do if anyone ever pulled a gun on us again, threatened our lives again. Terrence was and is a cheerful animated human being with a beautiful heart and soul, but now his face darkened. So did mine. Terrence said, “Next time someone threatens my life they better not miss ‘cause I’m gonna try’n kill’m. I’m sick of it.” We were heart and soul joined in this. Our eyes were joined as I said, “Me too.” In both of us, and those like us, there is a bone chilling electrified intimacy when someone tries to kill you, threatens your life.
There is a heartless cruelty found in the minds of those who knowingly put the lives of others at risk. And, I can tell you, some of what joined me and Terrence in that moment churns through my veins now as I experience a Department of Health that is knowingly putting me – and no doubt others – at risk.
See Information Key Below for Further information
- Discussion of sound machines/life alert surfaces in emails, in Feb. 2010
- Feb. 26 email referencing voice mail from Sue Williams, from CFDS saying they will help me get sound machines.
- April 9 email to Jessica Pakatar from William Buse (my therapist) documenting need for sound machines and life alert.
- April 12 email documenting first unpleasant conversation with Natalie Marabello in which she said Jessica Pakatar should reach out to Rob Korotich to make sure therapist email enough. Note: Marabello does not inform us a letter from an MD will be needed for life alert and white noise machines.
- May 21 email documents conversation that day with Sue Williams in which she said Jessica Pakatar could work with someone in CFDS business office to order to obtain sound machines.
- Circa late May we are told by RRDC office that all necessary documentation was in for white noise machines and life alert approval.
- Two months later on August 12 email documents phone call with Rob Korotich who says Jeanette Biggs of DOH now says MD letter is needed for sound machines and life alert. This is Four months after April 12 conversation with Marabello.
- August 12: approx date I filed a complaint with DOH via BIANYS complaint line re: Marabello’s earlier behavior on the phone and poor handling of assistive technology request.
- August 12 email from me filing complaint directly to DOH complaining about handling of Assist. Tech request sent to: Mark Kissinger, Mary Ann Anglin, Cavallo, Jessica Pakatar – No response from DOH
- August 18: Marabello calls to investigate assist. tech. complaint, announces she is aware I have active complaint against her but says she cannot investigate that complaint. I hang up on her when she appears to imply I am feigning need for white noise machines and life alert. I send out an email same day to: Mark Kissinger, Mary Ann Anglin, Maribeth J Gnozzio, Bill Combes, Sim Goldman, Marie Cavallo, Beth Cassidy, Jessica Pakatar, Maria Relyea, KAC Leadership Team notifying them of her behavior. – no response from DOH
- Circa August 19 file separate complaint with Sunnyview Hospital, Marabello’s employers re: her behavior.
- August 26, extensive telephone Interview with DOH’s Jan Koenig re: Marabello complaint and assist tech. complaint.
- Letter sent same day as above via email to Jan Koenig at her request documenting complaint interview
- Sept. 7 letter from my Primary Physician documenting need for life alert & white noise machines sent to SC & DOH (RRDC)
- Sept. 14, Jessica and I meet w/Marie Relyea and Wendy Tracy re: Marabello complaint filed with Sunnyview.
- Sept. 28 email sent to Jan Koenig expressing concern that I have heard nothing about Marabello complaint – no response from DOH
- Sept. 28 send letter to NE Health CEO Dr. James Reed seeking status of complaint filed against Marabello via Sunnyview
- Sept. 29 letter mailed to NE Health CEO Dr. James Reed re: Marabello
- Oct 4 RRDC signs off on assist tech and life alert and forwards to DOH for signature
- Oct 6 email to Gnozzio asking about HEAP and food stamp contacts in county I am moving to – no response from DOH.
- Receive Oct. 6 letter from Sunnyview CEO Edward J. Eisenman presenting their complaint findings. Send thank you letter the following day.
- Oct. 6 email sent to Beth Gnozzio copying Mary Ann Anglin, Lydia Kosinski and Jessica Pakatar again inquiring about hold-up on sign off on assist tech – no response from DOH
- October 7 email to Jan Koenig copying Mary Ann Anglin and Mark Kissinger inquiring about complaint status – no response from DOH
- October 12 email to Beth Gnozzio copying Lydia Kosinski and Mary Ann Anglin again seeking status of assist tech request – no response from DOH
- Oct 13 email from Beth Gnozzio saying she has made recommendations and under internal review; does not address assist tech.
- Oct 13 email to Beth Gnozzio asking when assist. tech will be signed off on – no response from DOH
- Oct 14 email to Beth Gnozzio inquiring about sign off – no response from DOH
- Oct 17 email to Beth Gnozzio inquiring about sign off – no response from DOH
- Oct 19 Mary Ann Anglin resends Beth Gnozzio’s Oct 13 email referenced above
- Oct. 21 email to Beth Gnozzio copying Mary Ann Anglin and KAC Leadership Team inquiring about sign off for assist. tech. et al – no response from DOH
- Oct 22 email to Beth Gnozzio copying Mark Kissinger, Mary Ann Anglin, Lydia Kosinski, Carla Williams, Bill Combes, Sim Goldman, Marie Cavallo and KAC Leadership Team – letting them know another complaint now filed via BIANYS – no response from DOH
BIANYS: Brain Injury Association of NY State
CFDS: Center for Disability Services, Albany, NY
RRDC: Regional Resource Development Center: Agency under contract with DOH to oversee waiver providers and services in a region of the state
Mary Ann Anglin: DOH Director, Division of Home & Community Based Care Services
William Buse, LCSW, PhD: Therapist
Jeanette Biggs: DOH employee.
Marie Cavallo: President of BIANYS
Bill Combes: NY State Commission on Quality of Care
Edward J. Eisenman: CEO of Sunnyview Rehabilitation Hospital
Sim Goldman: Senior Attorney for Disability Rights Advocates, Albany NY.
Lydia Kosinski: DOH Assistant Director, Divison of Home & Community Based Services
Natalie Marabello: RRDS (Regional Development Specialist) working for Capitol Region’s RRDC
KAC Leadership Team: Leadership committee for Kahrmann Advocacy Coalition
Mark Kissinger: Deputy Commissioner, NY State DOH
Jan Koenig: Member of the DOH employee assigned to investigate assistive tech. complaint and complaint against Ms. Marabello
Rob Korotich: RRDS in the Capitol Region
Jessica Pakatar: My case manager/service coordinator through Catholic Charities Disabilities Services, Albany, NY
Dr. James Reed: CEO of Northeast Health
Marie Relyea: RRDS Capitol Region
Wendy Tracy: RRDS Capitol Region
Carla Williams: DOH Deputy Director Office of Long Term Care
Sue Williams: Director of Service Coordination for CFDS
The Key’s content clearly documents the number of people aware of the DOH’s behavior. Nevertheless, the DOH does not sign off on my assistive technology request which has been deemed a medical necessity by my doctor and therapist and approved by their own RRDC. As a result, no white noise machines and no life alert which, in short, damages the quality of my life and puts me at risk. What is even more unsettling is this; if their treatment of me is not aimed at me personally, that means there are many men and women around the state absorbing the same neglect and thus being placed at risk.