A Glimpse At The Future: The Ability Beyond Disability team members responsible for staffing and planning the individualized day program visited our home this morning. A portion of the time was spent interviewing our daughter on her interests, social and vocational strengths and weaknesses and signing forms. We were also provided with an overview of her week during the month of July, prior to the young ladies taking up full-time residence. From what I could glean, these are 7 1/2- to 8-hour days of programming:

Monday and Tuesday – group activity days.

Wednesday – open planning with staff.

Thursday and Friday – volunteer jobs.

Weekend Planning – I gathered that for July this time is still entirely in the hands of Mom and Dad. After August 1 when the young ladies move into their apartment and have 24/7 staffing, the residential staff will be planning weekend activities with the apartment-mates. During the month of July, ABD will be hiring and training residential staff.

Perks On Us: The budget for our daughter that ABD draws from is very tight, typical of the times, with little wiggle room for extras such as Pegasus, the therapeutic riding program, or Angelfish, an occupational therapy swim and exercise program, unless these programs are covered by Medicaid, which I doubt. In the short run, pulling from our own pockets is fine. But over her lifetime, I have concerns.

Supplemental Needs Trust: We do have a Supplemental Needs Trust, essentially an empty basket in trust for our daughter, which will be filled upon the demise of the last surviving parent with half of our “estate.” Our cousin and our son are the trustees. Following today’s meeting, I inquired of our special needs/estate-planning attorney if we should fund a small portion of the trust now, to draw from for the extras. The answer was no. Once we put anything in the basket we have to file a tax return on the trust, with no real benefit to our daughter or ourselves. Therefore perks will be distributed in the typical way, out-of-pocket minus the special needs twist, just helping out the grown-up children, with a slight difference. With the typical child, the hope is that someday they fund their own perks. In our daughter’s case, her earning capacity will, at best, be limited and subtracted from her entitlements. Her lifelong perks will depend on what is in the trust. Fingers crossed that will suffice for a safe and perky life.

A Dozen Peers: The good news is that the “group activities” on the schedule for Monday and Tuesday will be populated by 12 peers, a jury sized grouping of 21 year olds who have just aged out of their school districts and reside in the surrounding towns. Most are currently living in their parents’ homes but may embark on the search for residential living in time. I was reassured to hear that the level of social functioning of the group members is on a par with our daughter. The thought of our daughter having a new peer group is exciting for both of us. After all, You Got To Have Friends.

The Apartment: Next Thursday, our daughter and I will meet at the apartment with ABD and their IT staff to determine where to install the router for wireless Internet. All wired up. All Fired Up! 

©Jill Edelman, M.S.W., L.C.S.W. 2011