One of the impediments to someone like Lauren moving into their own home is trying to figure out the financial end of the arrangement. Lauren may qualify for rental assistance, food stamps, heating assistance, etc. To apply for most of these things, you need receipts and bills for the residence. Of course, if you haven’t moved in yet, you don’t have the rental receipts, and you don’t have the receipts for your electric, gas, etc. If you don’t have those things, you can’t get approval for the assistance or know how much that assistance will be. So, you can’t be confident that an individual will be able to afford their potential living arrangement. If an individual’s family is willing to provide some financial support, it may make them ineligible for assistance or decrease the amount they receive.
This all got even more complicated this week when I went to the Social Security office to notify them of Lauren’s move. The clerk there explained to us that if Lauren receives, say $800 a month in income, and her expenses are $900 and we provide her with the extra $100, her income will be reduced and she will probably lose her SSI (and her Medicaid), possibly making her unable to live independently. If her income is $800 a month and her expenses are $700, then she is fine. But they can’t tell us how this will all work out for Lauren until she has receipts from her rent and utilities. The clerk told us to come back when we have the receipts. So, basically, the regulations work against someone trying to be independent and a family trying to assist someone with a disability in having an adult life. I would imagine that since most families today live on a shoestring, in would be quite risky to have their loved one with a disability move out on their own without concrete figures with which to plan.
Our second question for the clerk at Social Security was regarding the monthly check I have received from Social Security since Lauren turned eighteen (my husband is on Social Security), because I am her primary caregiver and am unable to work outside of the home. We wanted to notify Social Security that Lauren was no longer living in our home in case my check would need to be stopped. The clerk didn’t know if the check should be stopped. She wrote a letter to the Social Security Administration. The clerk did tell us that if my check stops, Lauren’s will probably increase. So, then that will affect everything we have applied for – rental assistance, or will apply for - food stamps, heating assistance, etc.
Are you still with me? The bottom line is that the system works against an individual with developmental disabilities trying to live an independent life. It works against families trying to provide some assistance to help an individual live more independently. And, it is impossible to navigate the system or make prudent financial decisions or plans, because assistance is only available and calculated after an individual is already in a living situation. In essence, only those individuals who have unlimited financial backing from their families can attempt to live independently unless their living situation is overseen by a non-profit or provider.
Maybe it was a mistake to do the rental assistance paperwork, go to the Social Security office, and walk through the food stamp and heat assistance paperwork all in one day. By nightfall I had this kind of “Alice’s Adventure in Wonderland” kind of feeling. I had fallen down into a rabbit hole where everything was backwards, odd, and general nonsense. Like Alice, I had found a land where logic was topsy-turvy. Unfortunately, this is our reality, not a fantasy.