Unrealized Fears: The other mother and I had worries about the nighttime staff. The two women had appeared sleepy and detached at the all-staff introduction only a few short days before the girls moved to their new apartment and alarm bells related to nighttime, new home and strangers in charge rang loud in our maternal ears. Good news! Sixteen days into their new life and the girls love their night shift. One is super funny and the other sews a mean hem.

Day Seventeen: Is it really just over two weeks since that first night? Seems longer yet there remains much to do. Rugs and curtains (there is quite an echo in the living room with the red couch) and a measuring tape and posters or paintings on the wall await selection, purchase and placement. I hope that with the onset of fall days, the two moms and the girls can finalize some of this…but I do welcome the financial rest stop. We will be submitting receipts through Ability Beyond Disability to theDepartment of Developmental Services Rent Subsidy with the remote chance that they can help offset some of these costs. Unlikely.

Audacity: I finally became audacious enough to attach a letter from our daughter’s attorney to an extended family email explaining the nature of her Supplemental Needs Trust (aka special needs trust), emphasizing that this was not a solicitation but simply a clarification; our daughter can neither inherit nor receive any funds whatsoever in her name without losing her entitlements. Any contributions to her care have to be made out to the executor of her trust. It was with some trepidation that I sent this, as indicated by the fact that I actually waited several years before doing so (the trust was established three years earlier when, at age eighteen, all money was taken out of our daughter’s name to enable her to qualify for SSI and Medicaid). Now that she has reached another milestone, “adult independent living,” I seized the moment. Our families understood our intention and no one seemed to think we were passing the hat. Whew! In fact, several applauded our “foresight” and organization. We are blessed with incredible relatives on both sides of the familial aisle. Lucky Us.

My Motto, Don’t Wait: Anything pending and important requires action. And with special needs planning, you can’t skip steps. Therefore, the sooner you complete one step, the faster you can get to the other, child’s age permitting. The closure on this notification to family regarding the government stipulations for entitlements and the risks therein is a relief. Enough family members will remember long after we are gone and though we do not anticipate an avalanche of funding coming our daughter’s way, even a relatively insubstantial sum in her name could be problematic. The trust provides a pathway for enhancing the quality of her life, if anyone wants to do so. Right now it is an empty basket that will be filled with something upon her parents’ demise. To that end we have some control.

©Jill Edelman, M.S.W., L.C.S.W.2011