A Win for Angelenos with Disabilities—and Their Families

Mothers want the world for their children. We want them to be able to get an education, secure a fulfilling job, and nurture a loving family. When we learn that our children will be born with intellectual and developmental differences, or IDD, the picture in our mind of what their life will look like may shift, but we never stop dreaming about a bright future. 

At the same time, we never stop holding our breath about the path ahead for them.

My 15-year-old daughter Anya was diagnosed with a rare disease, tuberous sclerosis complex (TSC), at eight weeks old. TSC is a multi-system genetic disease that causes non-cancerous (benign) tumors to grow in the brain and other vital organs such as the kidneys, heart, eyes, lungs, and skin. For the first year-and-a-half of Anya’s life, she had 20-30 seizures a day due to a cluster of tumors on her brain. After trying a variety of medications, some that were not yet FDA approved, a few worked, and others did not. However, the only viable option was to have Anya assessed for brain surgery. This decision to move forward with brain surgery was not easy, but was one of the only real solutions to give her a better quality of life. Due to the placement of her tumors, she luckily was a candidate, and at 18 months she had a right temporal lobectomy at UCLA Mattel Children’s Hospital. Over the next few years, Anya’s seizures were controlled, but this is only one aspect of TSC. Anya is also on the autism spectrum, often deals with behavior and anxiety issues, has learning challenges and needs consistent medical monitoring for the various tumors on her kidneys, eyes and skin.  

Anya is currently a thriving sophomore at Santa Monica High School. Still, I’ve continued to witness up close the devastating results of a system that perpetually underserves, if not outright ignores, people like my daughter. I’ll never forget the heartbreak I felt when groups of kids were having sleepovers or birthday parties and my daughter was rarely invited. Or the time when she politely asked another middle-schooler to ride the Santa Monica Pier Ferris Wheel with her and the girl responded, “No. You can ride with your people.” The realities of her developmental differences meant I was constantly living in fear for her future. How would she be able to make friends? Could she manage college? A job? Her living situation? These worries have been a permanent source of stress for me and my family. It could be difficult at times to see a way through. 

The support structures for adults with IDD are even more limited than those for children. The infrastructure to provide them with meaningful employment, housing, and social opportunities is mostly non-existent. This community must reckon with the reality of skyrocketing housing prices in metropolitan centers like Los Angeles. Housing in L.A.’s core that does not discriminate against adults with IDD and provides on-site support is exceedingly rare, which renders independent living mostly impossible for adults with IDD.

This leaves adults with IDD in a precarious position. Only 11% of adults with IDD in the United States are able to live on their own. Little more than 20% of working-age Americans with disabilities are employed. And 40% of adults with disabilities report feeling lonely or socially isolated, which can have profound effects on their physical and mental health. 

This year, our family came across The Village — a pilot project of Cornerstone Housing, a nonprofit that creates and operates housing in Los Angeles for residents who have developmental differences.

For the first time since my daughter was born, I felt like I could exhale. 

The Village, which broke ground earlier this month, will transform a commercial property in Pico-Robertson into a state-of-the-art residential and retail site that empowers adults with IDD to live active, independent lives. It will be open to residents of all backgrounds who can live independently, with a portion of units allocated for low-income individuals. It will be staffed by a professional team that will be onsite 24 hours a day. It will even offer job training and placement, internship and apprenticeship opportunities, and post-secondary education assistance.

The Village combines nonprofit expertise, government support, and philanthropic vision to house adults with IDD in a city where building new properties is notoriously difficult. 

[.speaker-mute]The Village is more than a housing property. It also represents a new model that can be replicated nationwide. The Village combines nonprofit expertise, government support, and philanthropic vision to house adults with IDD in a city where building new properties is notoriously difficult. This development should serve as a shining example to nonprofits and philanthropists from coast to coast that, with the right vision, new housing with wrap-around services can be erected in city centers to empower America’s nearly 7 million people with IDD to live independently.

For too long, individuals with IDD have been excluded from public consciousness, leaving families to suffer alone. I know because I’ve lived this.

It can’t come soon enough. For too long, individuals with IDD have been excluded from public consciousness, leaving families to suffer alone. I know because I’ve lived this.

Our family foundation has sought to help children and adults with IDD pursue their highest ambitions. We are committed to funding programs and initiatives that empower these individuals to pursue education, employment, and independent living and to claim their places as valued members of their communities. When we learned about The Village, we knew that we had found a project that would make a lasting difference in the lives of people with IDD and their families. 

The Village made me think, for the first time since my daughter was born, that maybe there is a chance for her to live independently in a community that inspires and uplifts her, a chance for families like mine to connect and feel included, and a chance to fulfill that dream of a joyous, abundant life every parent has for their child.

Anita Bhatia, MHA, is Executive Director of the Ramesh and Kalpana Bhatia Family Foundation.