DSS: The Connecticut Department of Social Services, which handles the entitlements of Medicaid and food stamps, has decided to mess with my head in the last week or two. I can imagine how this must feel for folks who are more handicapped, cannot get to the DSS offices, or have few family members to deal with bureaucratic mistakes that impinge on food supply and health care amongst other necessities. Besides receiving a notice of a “new worker” assigned to our daughter’s case approximately once every three or four months, I received notice that her medical entitlements were to be dropped. Then I received another notice three days ago that I missed a scheduled appointment to consider an application for food stamps. Both notices were incorrect and fortunately went to Ability Beyond Disability, which is now in charge of all things financial for our daughter. Needless to say, it is daunting at best to think how increasing government cutbacks forecast on the horizon will compound problems for clients who are challenged with the normal routines of daily living.

Human Values, Missing: While Congress bats about the futures of the disabled as if they were those badminton birdies that are weightless and replaceable, I worry that our daughter and her compeers will experience an increasing deterioration of quality of life over the decades. This image is awful, and going on in many homes already. While millionaires shouldn’t be taxed at a rate to match middle class fellow Americans, perchance it might adversely affect someone, I forget whom, less fortunate folk can be sliced and diced in entitlements, education programs withered and roads and bridges cracked with fissures not unlike our culture at large. Human values? Missing!

Cobie Caillot: But tonight we party. Our daughter, her apartment-mate, my buddy and I will hear Cobie sing her heart out at the Ridgefield Playhouse. Every day that I am here will be a good day for our daughter. No one is going to mess with her future but she is amongst the lucky ones. I never forget that.

Hard Choices: I know families who are choosing to forgo dependency on government bodies for the care of their adult children though they qualify for government programs, because they are frightened by the uncaring hand of government agencies, frightened that programs can get cut; that quality of care can be compromised at the expense of their adult child. Many reasons. We chose a CRS category of housing for our daughter on the advice of our case manager and ABD as it gives us more control over where she lives, with whom she lives, and so on. To whatever degree we as a family can customize her care, we will do so. Depending on the government is a slippery slope indeed. But for most, providing funding for the long life of an adult special needs child is impossible. Fingers crossed, we will never let her slip. Hard choices for a lot of good people. Let’s hope that those who govern get compassion injections every two to four years. Intravenous would be best.

©Jill Edelman, M.S.W., L.C.S.W. 2011