Sometimes, dear friends, it is important to teach those who have say over the way your family survives to not mess with you when your life is working well. Like you teach a child not to touch a stove because it is HOT, sometimes you must teach the Community College, School, Caseworker, VR, ILC, Your Town, Your Fill In the Blank, not to touch You or your family because they will get burned. Too often it is the only way to remain intact. Sad, but true.
Take a breath.
We live in a world that is changing. Sometimes the changes are good and systems change is always good when we are moving forward for all persons regardless of ability.
Get out there and testify that we all need services and supports in the most integrated setting. We have gone ahead from "least restrictive" in education to MOST INTEGRATED stipulated in the Americans with Disabilities Act as interpreted in the Olmstead United States Supreme Court decision. More about that in days to come....
Now back to the basics:
No, we don't forget.
For a change of pace I offer a letter to the Department of Mental Health, the way services and supports are given to Mave. Names have been redacted. Use this as a template for how to remind a casemanager's supervisor why she gets a paycheck.
August 26, 1999
Ms. P,
Supervisor,
South County Placement Team,
St. Louis Regional Center,
Dear Ms. P,
I received your letter dated August 24, 1999 today and must reply to you with haste. What you report in your letter to me does not in any shape or form resemble the phone conversation we had on that date. Please be patient while I review the facts.
I am the mother and guardian of Mave , a person who is profoundly, multiply disabled and has always lived at home with her natural family, including her father. Mave is blind with prosthetic eyes, has severe spastic cerebral palsy, profound mental retardation, and is homebound due to back pain. Although a person requiring total care, she is a joy. Mave is on the Natural Family Medicaid waiver and receives services from the St. Louis Regional Center. Her case manager is Ms. R.
I received a phone call from Ms. R around the end of July asking if she could bring a new case manager to meet Mave. I am not sure of the date because I am still recovering from major surgery. In that conversation I told of the extreme distress a change in case management would cause Mave and her family and we agreed to keep Ms. R. as Mave's case manager. Both Ms. R and I felt comfortable in keeping the continuity of support because of the similarities of Mave's issues with her new caseload. We are dealing with the same waiver issues, care worker issues, contract issues and durable and non-durable medical equipment issues. Also, as Mave is approaching her 21st birthday, we have to look at the changes involved in moving from HCY to DOE funding. Because of past dealings with your regional center, I insisted on writing you, Ms. R.'s new supervisor, a letter requesting no change in case management.
After you received my August 3rd letter, you left a message on my voice mail asking to speak to me, but left the wrong phone number. I contacted Ms. R and received the correct number and left messages for you to call me. Finally, you called on August 24.
In our conversation you repeated over and over that you would allow Ms. R. to remain Mave's case manager for a trial period of only six more months. I listed to you reason after reason why a change would be detrimental to both Mave and her family. I repeatedly told you I would not consent to a change in case management. At the end of the conversation you pressed on that you would call me in six months. At that point, under duress, I consented to the six month trial period. Now, I receive your letter outlining a cheery conversation that in no way resembles reality.
Ms. P, let me make myself crystal clear. I did not, do not, and will not consent, now or in the future, to a change in case management away from Ms. R for as long as she is employed by the St. Louis Regional Center.
This entire episode has been extremely stressful for me and my family. You have never even met Mave. She is a person who requires total 24 hour care. Your department does not provide the majority of that care. I do. I have become disabled myself due to not getting the proper support services for Mave in the past. My husband has injuries from caring for Mave. Our daughter is loved and well cared for and we do not begrudge her still not sleeping through the night at the age of 20. But, I do begrudge you, Ms. P, the sleepless nights I have spent over your bizarre behavior.
I am sure you know as well as we do that Mave staying in our home has saved and will continue to save the Federal government, State of Missouri and taxpayer's money. As has been attested by Mave's physicians, therapists, teachers, numerous care givers, and the court, we have provided for her far better than the care she would receive in any group home, nursing home, or institution that she qualifies for. Let us keep Ms. R's competent support to enable us to continue to keep Mave in our home.
Please limit any future contact with me to written form only.
Sincerely,
Mavesmom
Cc: B R
J S
September 2, 1999
Dear Mavesmom,
B.R. shared your recent letter to J.P. with me today. Let me asure you that Ms. Ruedin can and will continue to serve as Mave's case manager as you requested.
Should you have any further questions, please feel free to contact me.
Sincerely,
Assistant Director, St. Louis Regional Center
**********************************************************************************************************************************
Now go to the Mave pageOK GO to Mave's Page and read the article by a student that appeared in the Kirkwood Call high school newspaper to cheer yourself up!