In his quiet moments, Bob Goldstone is haunted by an admittedly irrational but visceral fear.
The Palos Verdes Peninsula realtor imagines that after he dies his mentally impaired adult son will be left to wander the streets alone. And because no one gives him his medications, he succumbs to epileptic seizures.
"When I'm gone, it's permanent," Goldstone said. "I can't come back for another day and take care of this person. I have to do what I can for him now."
Parents of adult children with disabilities such as mental retardation, autism and cerebral palsy live with these kinds of concerns every day:
When they're gone, who will watch over their children? Will they have jobs? Opportunities to socialize? Food on the table? Health care? Will they be safe?
Some Southland parents of disabled adult children are tackling their biggest worry--where will their children live--in an innovative way.
They are convinced that the purchase of permanent housing for their adult children is the key to both their future security and self-sufficiency.
Group homes, one of the most popular living arrangements for the disabled, are too impermanent, the parents believe, and stifle their children's independence.
So in 1989 about two dozen parents formed a nonprofit group in Culver City called Home Ownership Made Easy (HOME). With federal and local grants they buy housing that is then rented at low rates to their children and to other persons with disabilities.
And a group of Torrance-area parents is going beyond buying rental homes for their disabled adult children.
The nonprofit group Home Ownership for Personal Empowerment (HOPE) will guide persons who have mental disabilities through the maze of actually purchasing their own homes or condos themselves. No homes have been purchased, but they have several candidates for homeownership.
And other parents acting on their own, like Long Beach resident Candy Kimble, have bought homes for their disabled adult children and established them in separate households.
HOME, the older of the two housing groups, has purchased a Culver City duplex and a four-plex in the Fairfax District of Los Angeles accommodating 14 disabled tenants. Rents range from $187 to $237 a month.
The group also has received a $500,000 grant from HUD to purchase four more condos in Inglewood and is applying for a $1 million HUD grant for 20 more housing units in Culver City, Hawthorne, Santa Monica and Los Angeles.
HOME's purchase of the Culver City and Fairfax buildings was preceded by lots of legwork and struggles with red tape.
HOME members visited a variety of neighborhoods, said board member Rob Dodson, looking for safe, clean areas that are close to public transportation and shopping. When they did find properties in a good area, the living units sometimes had to be gutted and retrofitted with a ramp and extra-wide doors to accommodate a wheelchair.
Lining up the money to buy the properties can take longer than finding them--months, even years. The parents often got lost in a maze of bureaucratic red tape.
Funding for both the Culver City and Fairfax properties originated with HUD and in Culver City was funneled through the city's Community Redevelopment Agency. The duplex was purchased outright with a grant for $425,000.
HOME bought the Fairfax four-plex with a $200,000 grant from the Los Angeles Community Redevelopment Agency. It was matched with an equal amount from HUD, which was administered by the state Department of Housing and Community Development. The grants need not be repaid, but both the CRA and HUD said they check periodically to make sure the facility is being used as specified in the grant.
Groups such as HOPE and HOME are part of a growing trend across the country, according to Derrick Dufresne, president of Community Resource Associates, a St. Louis consulting firm that deals with housing issues of the disabled and the disadvantaged.
He said federal dollars are beginning to flow once again for the development of low-income housing, but this time federal officials are looking at "new and innovative ways to solve old housing problems."
As a result, said Dufresne, states such as Texas, South Dakota, Michigan and Florida are using federal funds to establish agencies that are looking into progressive programs such as HOME and HOPE to address the need for affordable housing.
In Ohio and New Hampshire, residents with disabilities have already purchased some 50 units, ranging from condos and houses to mobile homes.
Dufresne predicts that such efforts are "just the first ripple in a huge wave" of disabled-owned housing that will sweep the country.
The concept was introduced in California a half-dozen years ago by Mike Danneker, the director of the Westside Regional Center in Culver City, one of 21 state-supported agencies scattered across California dispensing services to persons with developmental disabilities.