The doctors told Elizabeth Criss that a child with her daughter’s disorder would only live until she was 8.
She would suffer from seizures, the doctors said. She would likely be unable to communicate and would have problems with her vision.
Almost all of that was true, except Emily Criss is now 29.
“We never expected she would age out of the school system,” Elizabeth Criss said. “It feels good when the doctors are wrong.”
Now Criss said she worries about her daughter’s future. What will happen if Emily outlives her parents? Who will bathe her, feed her, change her and understand that she likes to sit on the cool, green grass because it soothes her, or that small, colorful toys calm her?
Thousands of families across California are grappling with the same questions as programs that serve the developmentally disabled are increasingly strained. Their numbers are growing and they are living longer. But a decade-old funding freeze has closed group homes, halted work training programs and reduced staff at some agencies that serve the state’s most vulnerable individuals.
And those who train them to work in the community and live independently say they are under more pressure than ever to uphold the quality of services.
Figures by the state Department of Developmental Services show that from 2004 to 2014, the number of California residents who used those services rose 37 percent.
Emily Criss is among the approximately 280,000 Californians with special needs. She is among the 76 percent who live at home and are cared for by a parent. And she’s among the 17 percent who are 22 to 31 years old, one of the fastest growing age groups in the state.
The increase in those who need services combined with the rate freeze could topple California’s system to care for those with disabilities, wrote the authors of a UCLA study published in 2011.
“These factors threaten the financial solvency of service providers, potentially resulting in decreased access to high-quality care and increasing the cost of care for the state,” the authors wrote.
California’s Lanterman Developmental Disabilities Services Act, passed in 1977, mandates that people with developmental disabilities and their families have a right to receive the services and support they need to live like those without disabilities. Under the act, California formed 21 nonprofit regional centers that coordinate services for people with developmental disabilities. Those regional centers distribute pay to the agencies.
NEED BETTER FUNDING
It makes California one of the best states to care for those with developmental disabilities, many agree, but the system isn’t perfect.
“All those services came from the Lanterman Act, but the problem is they didn’t properly fund it,” said Kenneth Lane, executive director of The Adult Skills Center in Lake Balboa. The nonprofit organization supports, trains and instructs individuals with developmental disabilities across the San Fernando Valley to be as independent as possible.
During the Great Recession, more than $1 billion in funds were cut from the Department of Developmental Services. That funding has not come back, advocates say.
The current state budget signed by Gov. Jerry Brown in June calls for $5.9 billion in total funds or $3.5 billion in general funds for the California Department of Developmental Services, an increase of $400 million. But the rates paid out to regional centers will remain the same.
The issue is expected to be discussed in the next several weeks during a special session Brown has called. The committee, made up of several lawmakers who have pledged some sort of funding solution, will examine how to raise more money and how to increase oversight of those funds.
“The administration is mindful but is not committing higher ongoing levels of spending because we know that a downturn in the economy is coming. We just don’t know when,” said H.D. Palmer, spokesman for the state’s Department of Finance.
In the years since the recession, Palmer said the revenue stream is still volatile and anything can happen, but that the Department of Developmental Services wasn’t singled out. There were deductions in Medi-Cal rates and within the Department of Rehabilitation, among others, he said.
But advocates for the developmentally disabled see it differently. They see a state flush with more money and say it’s time programs see at least a 10 percent increase in funding across the board.
The lack of rate increases has created a groundswell of protest from various groups, including the Lanterman Coalition and the Association of Regional Center Agencies, who have launched social media blasts and letter writing campaigns.
In addition, there is concern about the 1,000 or so people who live in state-run homes for the developmentally disabled, including one in Pomona and another in Costa Mesa. An investigation by the Center for Investigative Reporting found that those state-run homes have been directly responsible for 13 deaths of patients since 2002. Brown and activists agree it’s time to close those homes and allow those who live there a chance to live in the community. Closing the homes would save the state millions of dollars, but it’s unclear if those dollars would follow the clients or go toward rate increases.
“Yes, we absolutely want to take people out of the developmental centers and fold them into the community programs, but again, where will we get that funding?” asked Cyndi McAuley, the executive director for the Therapeutic Learning Center for the Blind, a nonprofit in Reseda where Emily Criss attends a day program. The organization runs a residential and after-school program, as well as other programs in the community.
“So many of my colleagues and I working in this field are wondering what will be the impact to the community if the rates continue to be frozen,” she said.