My daughter Emma is an 18-year old young lady with a developmental disability, and over the last few years my wife and I have been focusing on where and how she will live when she leaves our home. I founded ECC to create the living environment we want for Emma but could not find.

Emma lived in the hospital’s Special Care Nursery for 2½ months after she was born, and we fed her through a tube for another 2 years after she came home. She has a rare genetic condition which impacts her physically, cognitively and emotionally, and parenting is still a daily challenge.

Lauren and I have been stubbornly working to cure Emma’s condition since she was born. I received a degree in Biological Sciences before law school, and Lauren earned a Ph.D. in psychology. We thought we were as equipped as anyone, intellectually and financially, to facilitate some treatment or cure for Emma. I spent countless hours in the library of the local medical school, asked friends to help fund research and learned about orphan drugs and the FDA. Lauren teamed with other parents to create and operate a non-profit organization to fund international research on Emma’s condition. And while we’re both pleased about the important progress that’s been made, we realized Emma is not likely to be cured soon. So, again, we got busy.

My investigation into group homes was haunting. There are many competent service providers and operators, and many knowledgeable and caring professionals ready to provide housing, habilitation and other supports for Emma. But the few group homes we found in the city were reliant on and constrained by government and charitable funding. Residents were stuck, indefinitely, with roommates chosen for them by others.

We heard of terrific farm-like settings far out of town, and of parents sometimes grouping together to buy urban condos or houses for their adult children. But just like at the group homes scattered around the city, all these residents were isolated rather than integrated, and their social, recreational and vocational desires were entirely dependent on the price and schedules of an ever-changing roster of minimum wage workers. I was awake countless nights.

Admittedly challenging at times, Emma is also a delight. She shines most brightly when focused on a purpose she’s chosen, and when she’s hanging with her friends. She, like me, wants both independence and engagement; solitude and intimacy; ambition and leisure; structure and choice. And like all of us, Emma thrives when immersed in the comfort, frustrations, responsibilities and love of her family and the friends she’s chosen for herself.

We knew Emma would struggle to realize many of these qualities living in the communities we discovered, qualities Lauren and I take for granted. Now, we’ve found something better for her. We are thrilled to see this project come to life, and more, relieved to know she will be safe, active and looked after long after we’re gone.

Sincerely,
Mark Roth