Mirriam is a 19 year old girl with White-Sutton Syndrome, an extremely rare genetic disorder that causes developmental delays, sleep disturbance and behavior problems.
Since 2014, Miri has been living in a group home, where she's been happy and thriving. Unfortunately, several crises since last fall disrupted that stability severely, and Miri has been in the ER and "ER Psychiatric Overflow" of the hospital since Memorial Day weekend.
Everyone agrees that the next best step for Miri is to transition her to the "adult" program of care, and find her a home of her own; however, locating a home and staffing it will take time.
One of the challenges that has been presented is finding a place that a) can be rented as a single-person home and b) has a landlord that is willing to accept Miri and all her...quirks... as a tenant. Since one of her quirks is kicking holes in drywall and trying to break things, finding an appropriate long-term apartment, or a suitable small house is, well, unlikely.
The solution that has come up is a duplex owned by people who are familiar with Miri, and willing to deal with the mayhem that comes along with her living in a space.
Several duplexes have been looked at, with an eye to not displacing anyone already living there.
This is an URGENT situation, as the ER Psych Overflow is NOT the appropriate place for her to be long term, the group home is no longer an appropriate placement, and there are LITERALLY no other options for her.
The sooner we have funds, the sooner we can set the ball rolling to get Miri back into a safe, healthy living environment.
Some questions answered:
"Why not just get a mortgage?"
Because the family is already debt strained, and would not qualify for a second mortgage and added debt. The best option is to pay for a home outright.
"Why isn't the state/agency/someone else doing this?"
State agencies and the care agency are looking into rentals, a slow and laborious process, with no promise of a positive long term outcome.
"Why a duplex?"
For two reasons, one, it leaves the second side open to possibilities that can offset costs of maintanance, insurance, etc; and it could give Miri's family members a place to stay when they come to visit, rather than the expense of a hotel.
"Will Miri's family own this place? How will that impact her legal status?"
Right now, the plan would be for the home to be owned by someone other than her parents; we're still looking into the hard legalities and logistics, first we need the money to secure a place.
"What if you don't reach the goal? What happens to the money?"
Our intent is to refund contributions.
"This is kinda crazy"
It is, to be sure, a very out-of-the-box solution; but for the past 3 months we've watched Miri sit in a bare ER room, and watched agencies spin their wheels trying to come up with a Plan, because there's no housing and beds easily available. It's time for some decisive action.
- Ian Panzer
- Dan Gaichas
- Tony Busch