In Rowland Heights, 77-year-old Sally Milano prepares her last wishes to make sure her son Philip will be cared for, from his health down to clean shirts hanging in his closet and his shoes checked for holes.
In Palos Verdes Estates, 74-year-old Barbara Aranguren and friends organize an annual wine fundraiser so the community care home where her daughter Tina lives can continue to operate.
And in North Hills, 68-year-old Eva Domnicz visits her son Roberto each morning before she heads to work, to see him smile, to make sure he’s happy in the residence he shares with five other people.
Milano, Aranguren and Domnicz are all mothers of adult children with developmental disabilities. The trio are among thousands of California parents who raise money and awareness to help keep group homes and other living options for their adult sons and daughters operating at high standards.
But their fears are growing for their children’s continued quality of care. Since the 2007 recession, providers estimate $1 billion in state money for services to the developmentally disabled has been cut, including funding for programs that provide job training and skills to 270,000 Californians. Since then, state funding has stagnated while the cost of living in California soared.
And state lawmakers have stalled on acting on a proposal for funding increases. A special session that began in June has yet to include any formal presentations on more funding for the developmentally disabled. The special session ends Friday but can run longer if regular session bills need more discussion.
In the meantime, programs for those with developmental disabilities remain fragile, especially residential services, said Eileen Richey, executive director for the Association of Regional Center Agencies.
“What’s so sad about it is the most important question parents have is, ‘What is going to happen to my child when I’m gone? Where are they going to live?” Richey said. “Right now, our system is so unstable.”
Her organization released a report earlier this year called “On the Brink of Collapse.” The report’s authors found that the Golden State spends the least in the nation on people with developmental disabilities but has some of the highest caseload ratios in the country. One survey found that 435 beds have been lost due to program closures and 1,300 day programs and work options are gone.
Californians with special needs, almost half are 18 and older. Of those adults, 30 percent live outside their parents’ homes, according to data from the state’s Department of Developmental Services. Living options include group homes, Section 8 housing or community care licensed residences
In June, legislators agreed to include a 5 percent rate increase in the budget effective immediately that would have funded Supported Living Services, In-Home Respite Services and Supported Employment Services for the developmentally disabled.
In addition, there would have been a 2.5 percent across-the-board rate increase for all provider categories beginning in January, among other adjustments. But when California’s budget was approved, no added funds for special needs were included. Instead Gov. Jerry Brown called for a special session to discuss options. No proposals have been filed, only place holders.
CALLING ON THE GOVERNOR
The inaction is surprising, Richey and others said, especially in a year when Los Angeles hosted the Special Olympics.
“We all were hopeful that the person we would really get this message to is this governor,” Richey said. “We were hopeful that having the Special Olympics here in California would get that message to him. It’s unclear if that has occurred.”
Under California’s Lanterman Developmental Disabilities Services Act, passed in 1977, people with intellectual disabilities, cerebral palsy and epilepsy and their families have a right to receive the services and support they need to live like those without disabilities.
California formed 21 nonprofit regional centers that coordinate services for people with developmental disabilities. Those regional centers distribute pay to the agencies.
Those with developmental disabilities, their parents and advocates came together statewide this year and launched protests, visits to Sacramento and a letter-writing campaign to raise awareness. Aside from support from lawmakers, little else has happened.
“He’s hard-nosed when it comes to disabilities,” Milano of Rowland Heights said of the governor.
“We have a responsibility for our children,’ she said. “We want to give better to our children then we had growing up.”
Milano is past board president of the San Gabriel Pomona Regional Center. She said she became active in the regional center because her son Philip had trouble socializing with others. He was born at a time when the word autism wasn’t used.
“I took him to Children’s Hospital in 1968 and the psychologist who worked with him said, ‘He will never be a mental genius,’” Milano said. “All of us (parents of children with special needs) have a big heartache because in a way, our children have not grown up.“
PLANNING FOR THE FUTURE
Philip Milano, now 49, lives in independent housing in Temple City. Since he was a teen, he has worked and sought out his own employment, his mother said. He worked in food service at the University of California in Santa Barbara, at restaurant chains, in hotels and most recently in Vons for 10 years before it shut down and became a Haggen grocery store. That’s when he was laid off by the company. But as he ages he has had some health problems.
When her husband became ill several years ago, Milano said she sat down, wrote a letter of intent and drew up a master trust so that Philip would be cared for after she passes.
“I’d like people who look after him to look at the bottom of his shoes, to look in his drawers to see he has enough underwear, like I do,” she said. “I want them to look to see if he has shirts in the closet with buttons on them.”
Milano said she knows care at group homes has come a long way since she once visited one decades ago. That’s when she noticed men with ropes tied around their waists instead of belts.
“I saw that and cried,” she said. “I would say, ‘That can’t happen to my son.’”
Many groups homes for the developmentally disabled began with families who wanted their children to live in a home setting rather than state hospitals. One of those is Peppermint Ridge, a nonprofit founded in 1959 that operates homes for 94 adults with developmental disabilities.
The Corona campus has five homes, an administrative building and a swimming pool. The nonprofit also operates six individual homes nearby and offers activities on weekends and evenings.
Yet despite its longevity, it too is in a fragile financial state, said Aranguren of Palos Verdes Estates. She and her husband discovered Peppermint Ranch about 25 years ago and liked what the homes offered. Their daughter Tina, now 46, has lived there ever since.
“We are doing everything we can do to help it survive,” Aranguren said. A few years ago she and her friends formed South Bay Friends of Peppermint Ridge. The group has planned a wine-tasting fundraiser for Sept. 20 from 3 to 5 p.m. at the WineShoppe in Torrance.
“State reimbursements fall really short, and they need thousands of dollars to bridge that gap,” Aranguren said.
At other group homes, keeping staff remains an issue as regional centers can only afford to pay the minimum wage.
That’s the case at a group home operated by New Horizons, the San Fernando Valley’s oldest agency of its kind.
Domnicz said she’s very happy with the care her 41-year-old son Roberto receives. But she’s noticed the staff turnover.
“This is the kind of job you don’t do for money,” she said. “You do it for love. It demands a lot of attention. It’s not easy.”
She said she decided to move Roberto into the New Horizons group home when her husband became ill. Eight years later, Roberto, who was born with brain damage, speaks more than he ever has before, Domnicz said.
“For me it’s a peace of mind to have my son in a place like that,” she said. “I recommend it for any parent who has doubts. It’s not easy to let your son go.”
She said she’s very involved with the group home, visits Roberto regularly and tries to tell parents that they need to plan for the future for their special needs children.
“If I die tomorrow, I know that Roberto is in a good place,” she said. “That is priceless.”