All the Comforts of Home

Daughter Dearest opened her refrigerator to make herself some breakfast this week, only to discover a pan of chicken feet lying in wait on the bottom shelf. For someone with OCD and Aspergers, you can just imagine how that went. 

Actually, it went surprisingly well. 

As a new resident of one of the rapidly multiplying student apartment complexes in our area, DD is encountering more than just chicken feet. This summer she's exploring semi-independent living as a sublettee in a furnished 2-bedroom apartment. For a few months, we're (DD and parents too) testing the living-away-from-home waters. 

Housing for young adults on the spectrum is, not at all surprisingly, an increasingly hot topic among families. While the number of adults on the spectrum who need safe, comfortable housing grows, the residential housing options are slim to none in many communities. Parents are cobbling together their own shared living arrangements or are scrambling to figure out how to find suitable housing and individualized supports for their sons and daughters so they can avoid group homes or larger institutional arrangements that would simply be torture to our children. 

Sure, they can continue to live at home. For awhile. DD would actually prefer that. We're the ones that gently nudged her out the door last month. FF, on the other hand, would like to get out of here as soon as we can make it happen. Unfortunately, that's apt to be later than sooner in his case. 

But there's always that nasty, niggling question in the mind of every parent of a child with special needs: What happens when we're no longer here to wash the laundry, make dinner, ensure the meds are taken, insist on an occasional shower, buy the size 16 shoes, drive them to class, schedule the tutors, listen to the heard-it-a-hundred-times-before discussion of what movies could earn Oscars, and pay the mortgage? (That's the longer version of "What happens when I die?")

It comes down to:

• people in their lives willing to guide, encourage, and be there (whether paid or unpaid),
• a residential model that fits, and
• money.

For DD, who drives and is more independent, it's more about the model and the money. The supports will be important too, but, at the ripe old age of 25, one of the things DD increasingly recognizes is that she NEEDS certain types of supports. For FF, who doesn't think he needs anything or anyone, we'll need to carefully consider and construct a model that works for him and that incorporates both direct and behind-the-scenes supports so that he can function as independently as possible. 

Ironically, it seems the higher functioning you are, the more money becomes an issue. Son FF will likely need to receive Medicaid, which could help with the paid long-term supports, and Supplemental Security Income (SSI), which may help with housing. And an ABLE account will be a must. 

DD, however, is high functioning enough to hold a job and she may not need benefits for housing. So what WILL she be able to afford on her own?  That's the scary part. Also, she transitions to the Affordable Care Act next year, so we'll see how that goes for health care. Paid supports? Not sure how that will work either. And an ABLE account won't help if she's not on benefits. For now, we're footing the bill for the Summer Housing Experiment of 2016.

So far, we're just focusing on boosting her independent living skills. Writing the rent check on time (we gave her the funds to put in her account). Grocery shopping. Cooking (eew!). Keeping the bathroom clean. Getting herself up and out the door in the mornings. Knowing who to call (and making the call!) when the closet door comes off its hinges. 

I highly recommend joint meetings with a therapist to plan big transitions like these. The gentle nudging started there. DD is much more amenable to suggestions from her trusted therapist than she is from her parents. We talked about how it could work, the type of living situation we would look for, a part-time job search, summer classes, and how long the arrangement would last. 

After looking at apartment options all over town, DD responded to a college classified ad on her own, for discounted rent in a 2-bedroom apartment that would be vacant May 1. She and the sublettor met once and worked out the agreement. (Good for her!) The rental office took over from there. Since she's a sublettee, the complex would not clean the apartment, so we took on that job. BUT, since the complex rents the units by the room and not by the apartment (college rentals are big business--and a semi-shady one at that!), they have the right to place a roommate in the other empty room. That was a surprise. 

Move-in was gradual. We cleaned (yuck!) and loaded in some of her things. Then we left town for a 10-day vacation (more about that in a later post) and returned to move in the rest of her things only to find a woman cooking in the kitchen. Surprise! The apartment complex placed a roommate in the second room without notifying either one of them. 

Though her roommate seems nice enough, we were hoping DD could just chill out and acclimate to her new place. Not so much. She's doing okay, but I suspect her anxieties cause her to be on guard much of the time. I don't think she's able to completely relax. And I think she stays in her room when the roommate is there. The upside, I guess, is that it may force her to learn how to get along with another person in a shared space. (Separate bathrooms are a very good thing!)

The new apartment is just minutes from our house, so there's a lot of going back and forth, which we're okay with. Sometimes she just needs a break, and it's okay with me if she's coming here for dinner a few times a week. 

The part-time job? Working on it. So to speak. DD's submitted a couple of resumes, but it's slow going and she's becoming discouraged. She only wants a part-time job so WorkOne isn't an option. She doesn't receive financial aid (I wish!), so campus work study jobs are not available to her. But things are looking up. Tomorrow she has a phone interview with a big box retailer. (FF's phone interview with that same big box retailer was a learning experience for him!)

As you might have guessed, DD's new roommate is an international student, thus the poultry delicacies. And unlike DD, she knows her way around a kitchen. But that means lots of unfamiliar odors (a sensory issue) for DD, and cupboards that are stuffed with unusual wares. Very little room for DD's peanut butter and bread. Who knows? Maybe DD will learn Szechuan cooking during her short stay this summer.

The housing experiment ends August 1. Then what? I don't know. (What!? You thought I had all the answers?) Monthly rent in a college housing market is expensive. She'll move back here, and we'll reassess. But I'd like to figure out a longer term solution soon. If not, maybe we'll need to initiate the Summer Housing Experiment of 2017 next year. 


Want to learn more about available housing options in your area or want to explore innovative residential support ideas in other states?  I really like "The Journey to Community Housing with Supports: A Road Map for Individuals and Their Families in New Jersey," recently published by the Supported Housing Association of New Jersey.  And check out the Autism Housing Network, a website and project of the Madison House Autism Foundation.