A Team of Caretakers: Ability Beyond Disability, our service provider agency, is hoping that the program developed for our daughter and her apartment mate will serve as both a template and a model program in the State. Utilizing the CRS residential category (a Connecticut Department of Developmental Services (DDS) model that translates to Continuous Residential Supports For Young Adults) allows ABD to consolidate services with more flexibility and autonomy while within the strict budget allocation and enables parents to choose the housing location and be influential in designing aspects of the program as well. Most of the team members providing the various services met with the parents yesterday.

Group Leader:  The meeting was held at the ABD HQ where are daughter attends DSO (Day Service Options) twice a week. Team members took turns introducing themselves and describing their roles. All but two had previously met our daughter. The residential staff alternate shifts, 3 days and four days. Two alternate the day shift, two the night shift. The day shift staff are trained life skills providers or have a special education background. All new staff attend an ABD two-week training and an additional two-day training where they learn about their specific clients. Included in the team are the two DSO group leaders responsible for the group of twelve who recently aged out of their school districts. The young fellow, a delightful Peruvian born fellow (his origins intrigue our daughter) who received the more romantic appellation from our daughter early on, is the chick magnet who draws the girls group together. Another team member, the behavioral specialist (BMPS), will visit the girls at their apartment weekly and consult with the team. There is a nurse assigned to the team, also visiting on a weekly basis.

Shared Impressions: The two parent groups each had a private meeting with the team. Last evening the OM (other mother) called me. We compared notes and had identical takes on each member. They are a wow team, energetic, smart and eager. However, both of us were on the fence about the night shift. The OM and I are professionals in the health care world and have worked in settings with para-professionals and aids of all kinds and know the signs of the overworked, underpaid and probably exhausted, who are often working two jobs and raising families. The night shift staff gave off some of that vibe. Both women appeared detached and disinterested for much of the meeting, one of them earnestly yawning and rubbing her eyes. Exhausted. The other mother has pressing concerns regarding her daughter’s nights as the daughter has sleep issues. We pooled our fears and I made a call to the residential coordinator/backbone of the operation though the workday was over. “How rude,” as my daughter would say. But the deadline is Monday night when these girls are going to be bedding down in a new place with strangers and we are worried.

Diplomatic? Not Me: Mindful though I am of the fact that our coordinator has poured hours of her expertise and unbounded dedication into setting up this program, I do not pull punches. I asked for very specific data on the ladies references, the protocols of the night shift, and how the ABD staff measures whether the unwatched night person is doing their job. We spoke of how frequently they would check on the girls, how close in ear shot they would be, and questioned what the staff would be doing all night (cleaning minus the vacuum, amongst other tasks) and how can that be checked. I feel empathy for these women who are striving to care for others and yet some anxiety remains. The OM will be making a similar phone call tonight after work. I didn’t feel good either before or after the call. And my hubby, lurking in the distance, and prowling the garden, had a hands-off attitude. He is a part-time psychiatric consultant at ABD, has been for 25 years and is in no way concerned. I imagine he feels I am out-of-bounds or just silly. But I know as a mom that I am neither.

Suitcases and Final Touches: Today I take our daughter to her Pegasus Therapeutic Riding program and after some errands (she wants new PJ’s for the inaugural night) we will pack.

The First Night Will Be The Hardest; Or The First Week; Or the First Month: It is simply a matter of safety. I feel confident that the program is wonderful, the apartment outstanding, the location perfect, and most of the team terrific. But will she be safe all night? Every night? What is it about the night that makes us all so scared? I will keep the cell phone on for the first few nights, or weeks or months. And fingers crossed, I will hear great things and funny stories about the late night staff and feel reassured and hopefully rested too.

©Jill Edelman, M.S.W., L.C.S.W. 2011