My latest advocacy letter and request for help

From: Grace Wallis
Sent: Monday, January 26, 2009 6:34 PMTo: Ray, Care CoordinatorCc: Beth, Care Coord. Supervisor; Lisa, CT family network; Shari, Administrator favor-ct.org); Daliah, Volunteer DCF worker@ct.gov); Brian DCF Administrator @ct.gov); father; Julie Therapist at sub-acuteSubject: Where are you? Henry DOB/99

Dear Ray,
I am pretty sure it has been 14 days. Are you out there? I know you are overworked but please do not forget me, Henry and Harry.

Did you know that with out care coordination I am not able to access services from Favor? There is a definite flaw in this Connecticut mental health system.
In Ohio kids like Henry qualify for the county mental health system and are assigned a service coordinator that does not drop them like a hot potato in a time limit of about 3 months even if they go to sub-acute. Henry has a SEVERE chronic neurological brain disease and will need constant care coordination at least until he is 18 and odds are for the rest of his life.
What happens when care coordination has to be dropped? Let me share with you my experience. Advocacy services from Favor are discontinued. The school at the sub-acute did not get the IEP service and goal pages for a whole month while he was attending. This means they were not aware he qualified for OT services and needed a sensory diet. He has needed to be restrained three times. You would think that if a kid needs to be restrained there would be more of an effort to obtain his records or communicate with staff at his previous school (which they had releases for) and see what strategies have worked or been tried by others.
Henry’s transition to the sub-acute has not been easy either. He started in a double with a roommate he liked. I helped him put away and set up everything in his room. Unfortunately He and his roommate were moved with in 3 days of his arrival. Jason and his roommate were moved to a triple. Not a great idea. Henry always asks for a single room because he has severe enuresis. I realize after over two weeks after the move to the triple that NO staff member helped him put his things away and sort which was his desk vs. roommates. This would be wrong for a typical child but very bad judgment for a child who has ADHD and difficulty organizing/putting things in desks/and clothes in drawers. In addition food and drinks are allowed in the rooms. A desk he shared w/another student was soaked w/water that had been there for days, Henry likes to make his own science experiments! When I I realized the situation I organized his room by putting clothes away and toys books, and cleaning off the desks. There were several days worth of urinated on bed clothes/sheets under his bed and in the corner of the room. His bed had sheets on it with urine even though he had been gone overnight on a pass. Of course I complained. Henry did not like the 3rd roommate who ended up having to be moved out.
About two weeks later just after Christmas I told a staff person Henry’s room smelled like urine. The smell was horrible. She said she couldn’t smell anything but would check it. It also looked like a cyclone had gone through it. Many of his Christmas gifts were stuffed in a box and under his bed. A small Christmas tree decoration we had brought at Christmas (because the unit took down the tree in the living room as a consequence) was not put up because the outlets didn’t work.
The next day I came to take Henry on a pass for dinner. The room still smelled like urine so I checked his drawers. He had over five days worth of peed on clothes in his top drawer which had soaked the clean clothes. Henry was very frustrated with me and we ended up staying on the unit. My mother and my sister helped me clean his and his roommates’ room. We had 3 large bags of dirty wet clothes and bedding, 2 bags of stuffed animals to be laundered and several bags of garbage. We spent 3 hours cleaning up. There was even urine in the trash can water on the desks again and food in the closets and under the bed. Yes, I complained again.
Henry now is in a triple by himself. The roommate was moved which made him sad and worries me that he may have two other kids move in. One of the excuses given to me about this whole situation was that the unit is short staffed. If they are they should not be accepting additional children until they are staffed appropriately to meet the needs of the children.

I am sharing my story in hopes of trying to change the system. I know all of the staff involved feel overworked but please don’t give up on kids like Henry and help me to change this system. I look forward to your call.
Sincerely,
Grace Wallis Gibson, M.Ed.
Harry and Henry’s Mom