The Social Security Office, Social Services, and a Trip Down the Rabbit Hole

July 29, 2011

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.

She Woke Up Laughing

July 22, 2011

7/19 She woke up laughing

7/20 She woke up laughing

7/21 She woke up laughing

Those are the entries for the last three days in Lauren’s journal. Her caregivers maintain the journal to keep each other apprised of daily events, seizures, and any other noteworthy items. I peek into it when I’m at Lauren’s house.  Can you imagine how I feel when her happiness is noted day after day? 

I had moments of doubt many times that Lauren would successfully be able to move into her own home. And, many people questioned the decision, not so much because they thought Lauren would not be successful, but mostly because they didn’t think I could handle it. But since I began to implement the idea that she would move into her own home, it has just felt “right”. Even though I did question the idea of her living on her own, I always came back to that feeling of rightness. And now, her reaction to the move fills me with relief, gratefulness, and a kind of wonder that we have indeed pulled this off. Lauren is happily ensconced in her own home with people who care for and about her surrounding her.  If I had a journal, today it would say, "Mom is smiling."

A Letter to Lauren

July 11, 2011

Dear Lauren,

I sat in your empty room this morning. Divested of your treasures, assorted shoes lying about, and pictures of the people that have loved and cared for you over the years, it is simply a room, an incredibly quiet room. There is a stillness throughout the house as if you have taken the “energy” of the house with you as well as your things. I feel like I have lost my anchor, my reason to get up in the morning, the guideposts of my day, now that your schedule is no longer mine. I still hear you in the night, rustling your covers, snuggling further into your pillow, and I picture your curly dark head. Yet, you are actually miles away.

No one or no thing has ever needed me, depended on me, as much as you have. Now you have a home of your own. This should be a time of celebration. It is a victory hard won. I thought I would be elated, that this would be a step forward for both of us. Yet, you have taken this huge step and I am paralyzed by fear. So many things could go wrong. Have I thought this thing through? Have I planned for all the possibilities, all the necessities?

Are you ready? Am I? You push me away lately – yet still raise your cheek for a goodbye kiss. Who will be there to interpret each sound, know what you need just from sharing your space? I can tell just by seeing the color of your skin or hearing the tone of your voice if you are hungry, tired, or unwell. Sure, other people know you, care about you, will be with you every moment, but will they listen or see the way I would?

You’re supposed to give your child roots and wings. Your roots are forever entwined with mine. Are your wings strong enough though, will you soar or fall? I must allow you to try. The weight around my heart should not keep you tethered unable to fly. I have built you a platform, the foundation is strong. I’ll wait here if you need to return. But for now…fly, baby…. fly.

Good Things

July 7, 2011

It’s been a busy, emotional last few days. Lauren spent her first night in her new home on Tuesday. It had been flurry of activity getting things organized and moved in. The house is becoming a home and looking quite lovely. There is still much to do, but the necessities are in place. Lauren took all of the furniture from her room at our house, and we gave her a few other pieces that we will no longer need when we downsize (hopefully, soon – real estate gods willing). The cable guy spent several hours on Saturday getting her TVs, internet, and phone set up....and managed to proposition me in the middle of it all (that hasn’t happened in years – of course, the missing teeth rather skewed the whole experience).

I think Lauren truly likes her new home. She is always smiling when she is there. I called the house to check on her Wednesday morning and N reported that five minutes after she went to bed the night before, she sat up and just began laughing. Thankfully, she went to sleep soon after. While I was talking to N, I could hear her laughing in the background.

I have not been laughing. There’s a feeling of, I guess I’d call it, unreality, in going through the days unlimited by my life revolving around Lauren’s daily schedule, her needs, constant decisions about her care. It was so ingrained in my existence that I feel rather ungrounded and disoriented. The house is a bit empty, literally and figuratively. George says it looks like we’ve been robbed with bits and pieces of furniture and Lauren’s things missing from every room. Who knew that I would have a harder time adjusting than Lauren? But, actually that’s a really good thing.