Imagine being in your early retirement-age and being the primary caregiver and provider to an adult son or daughter with developmental disabilities.
What happens to them when you’re no longer there?
“That’s my fear,” said Dena Ortega, mother and caregiver to her 35-year-old son, Jason Ortega, who has cerebral palsy. “It’s a tough subject to talk about. I don’t know what would become of Jason if something were to happen to me.”
For Ortega and thousands of other parents in Santa Clara County, that is their biggest fear - not knowing who will care for their children when they’re gone.
Currently, Ortega lives with her son in a small home in San Jose and works as a caregiver. When she's gone her son goes to a day program with Better Horizons for five hours a day.
"I never thought I would have to be a mother, a caregiver and be a superhero mother," Ortega said.
To prepare for the future, Ortega has been seeking alternative living arrangements for Jason and has applied to a number of affordable housing apartments across the county for months, but has found no such luck.
According to Housing Choices, an organization dedicated to finding affordable housing for people with disabilities, there are over 10,000 people with developmental disabilities in the county alone.
But so far, Santa Clara County only has 20 affordable housing locations specifically for people with disabilities.
“It’s very hard to have anyone accept a disability income and our income as parents,” Ortega said. “His income is not enough and my income is too much.”
Although Jason will always require assistance, Ortega wants her son to have his own apartment and learn to be supported not just by her, but by others as well.
“I don’t want him to not have somewhere to go if something were to happen to me,” Ortega said. “He needs to have something stable.”
But the lack of affordable housing units made available to those with disabilities has made it difficult not just for Ortega, but for thousands of others as well.
In hopes of finding a solution to the issue, the Santa Clara County Supervisors considered carving out funds from Measure A to finance the growing housing needs for people with developmental disabilities last week.
Measure A, a $950 million housing bond meant to address the growing need for affordable housing in the region, was first approved by voters in 2016.
At least 90 percent of the funding was intended to be used for projects to house the homeless and those with low-income. Within the measure, a portion of the money was also targeted to finance affordable rental housing for “vulnerable populations” such as people with developmental disabilities.
The Board of Supervisors last week considered changing guidelines in Measure A that would allow five percent of the bond revenue - $40 million – to be used for housing people with developmental disabilities. Although people with developmental disabilities already qualify for Measure A housing, new developments that reserve a specific number of units for “vulnerable populations” don’t qualify for funding unless it targets the homeless.
The meeting brought together a huge number of people in the developmentally disabled community and many took a moment to explain to the Board of Supervisors the importance of funding affordable housing projects for the developmentally disabled to prevent homelessness.
The Board of Supervisors decided not to earmark any funds from Measure A and instead chose to consider funds from places like the Mental Health Act.
“This is something that we need to do as a society,” said County Supervisor Cindy Chavez. “When we look at the housing need in California, we are not going to be able to use traditional pots to really resolve the problem.”
For now, all that’s left for parents and caregivers like Ortega is to wait and hope their children will have an opportunity to affordable independent living.
“He’s human and he’s entitled to have a beautiful apartment or beautiful home just like everybody else,” Ortega said.