All around the room are photographs. They line the long bookcase in a neat line, fill an album that adorns the coffee table and carry over to a small makeshift altar where they are surrounded by votive candles flickering silently in the dimly lit room.
They sit in the fingertips of a mourning mother, still in shock over the death of her teenage daughter, Wendy, almost two months ago, the cause of which is still unknown.
Wendy Serrano, who had epilepsy, mental retardation and Long QT Syndrome, a heart condition known to cause sudden death in young people, died in her sleep on September 11, 2009 at the age of 19. In addition to having to deal with the pain of her loss, her mother Judith Serrano now has to bear the brunt of mounting bills to cover the costs of Wendy’s funeral and old medical expenses.
“[We] barely made it for the casket and service … I wanted to get flowers for her grave, but I couldn’t afford them,” Serrano said, sobbing, as she clutched a picture of her daughter in one hand and a tissue in the other.
Judith Serrano is one of millions of parents across the country with special needs children who have had to struggle to make ends meet in during the recession. She is also one of many mothers who have looked for financial help from governmental agencies in her time of need, but have been haunted by the same two words: budget cuts.
Even before the economic recession began, families have often had to deal with high costs for vital items to care for their disabled children, some of which are not covered by health insurance companies.
In a study published in April 2006, Michael Ganz, assistant professor of society, human development and health at the Harvard School of Public Health, analyzed the direct and indirect costs that families of children with autism have to bear on an annual basis. He determined that, on average, it costs $3.2 million to care for an autistic person over their lifetime and $35 billion annually in societal costs for all persons with autism.
Valerie Diaz, who works as an instructional aide in Santa Cruz County special education classrooms, has experienced the financial hardship referred to in Ganz’s study firsthand. She has struggled to get financial assistance from Medi-Cal for her autistic daughter, despite the fact that she should be entitled to it due to her disability.
“I have to pay at least $400 a month to get her insurance because on my group insurance plan they don’t consider [autism] a preexisting condition,” Diaz said. “The whole insurance thing has been crazy … but she can’t not take her medication, and the medications are outrageously priced. If she didn’t have insurance I would have to pay over $1,000 a month — which I couldn’t do.”
Serrano also struggled to pay for her daughter Wendy’s medical expenses when she was still alive. She was forced to take out a $5,000 line of credit last October when Healthy Families, a state-run program that provides low-cost health care for children, stopped paying for her daughter’s prescriptions because she turned 19. To make matters worse, in the same month, California Childcare Services (CCS) told the Serranos that the program would only be able to assist them for another year.
Serrano still owes $1,000 on the line of credit, in addition to the $187 she will have to pay each month for the next year and a half to account for the remaining costs of her daughter’s burial.
“I think they should have another place for families [to get financial help],” Serrano said. “Kaiser Permanente offered me an insurance package [for Wendy] but it was too expensive, and it was hard because I was getting scared about who else was going to pay for her medical bills.”
Regional Centers Suffer
One of the public agency collectives hardest hit by the recession are the state regional centers, which provide integral resources such as in-home health services and respite, which allows family members to get a brief break from the daily care of their special needs children.
At the beginning of the fiscal year in July, the state legislature cut a combined total of $334 million dollars from the 21 regional centers in California. Cuts also came in the amount of $50 million dollars to the Early Start program, which helps children up to age three who may be developmentally delayed to secure early diagnosis and treatment.
The new laws also mandated that regional centers allot no more than 30 hours of respite per family, per month unless the disabled family member is at risk of being placed in a residential care home, or due to other extraordinary circumstances (such as the death of a family member).
Oscar Torres, who is the district manager for the San Andreas Regional Center located in Watsonville, says that they have little choice but to abide by the new laws.
“Many of the families were accustomed to getting more relief of care, but the law is the law,” Torres said.
He added that he understands that these cuts put some families in a more difficult position.
“Any of these cuts would affect families, especially ones under a lot of stress … respite is one of the services meant to relieve a family who has constant stress [from] taking care of a family member with developmental disabilities.”
Diaz says she feels as though San Andreas hasn’t advertised their services for families enough and that they haven’t entirely been there for her in the past to help answer questions about caring for her daughter.
“San Andreas is supposed to be a regional center but it’s never been quite that for us,” Diaz said. “I’ve pretty much had to research everything as I go by myself, which you have to do or else you don’t get what your child needs.”
Dana Cox, who teaches in the Early Start program that recently endured cuts, also has a son, Cameron, with cerebral palsy and impaired vision. While she has not yet experienced a decrease in the quality of care from the San Andreas regional center, she fears that one day she may have to place her son in a residential care home.
“For us it’s always a constant worry that programs for Cameron could be cut,” Cox said. “I was very worried that they were going to change in-home health services, and that’s what keeps him at home.”
Impact on Special Education
While the special education budget in Santa Cruz County hasn’t had to endure the same decrease in funding experienced by regional centers, employees in the special education department say they have been impacted by the fiscal crisis nonetheless.
Julie Pollack, a special education teacher in the county, says that the biggest problem she’s seen has been with a lack of one-on-one aides for disabled students. Aides are an integral component of effective special education as they help students build skills so they can eventually find success beyond the classroom.
“Classrooms have more kids and less aides,” Pollack explained. “The way that affects special education classrooms is that without aide support, kids can’t do community jobs.”
Vicky George is the executive director of Balance 4 Kids, an organization that she started ten years ago to provide one-on-one instructional aides for special education students. She is also the mother of twin daughters with autism, and like many parents of children with special needs, she found a calling working in special education because she was unsatisfied with existing options at public schools.
“When I moved to Soquel I decided to start looking at public schools and it was pretty disappointing in terms of the lack of materials that schools have,” George said. “Right then I started fundraising.”
George said that Balance 4 Kids has been forced to make difficult decisions in light of the economy, but has found creative avenues to avert any major changes in the quality of education provided.
“We considered earlier this year closing our community center, but we came up with strategies such as to share the two manager positions at the community center,” George said. “We’ve gotten some big fundraisers and private grants and combined, that has allowed us to stay open.”
According to Hal Ledbetter, senior director of special education for Santa Cruz County, special education has been protected for the most part from cuts thanks to President Obama’s stimulus package and federal mandates. One such mandate, known as IDEA (Individuals with Disabilities Education Act), protects the rights of persons with disabilities and funds roughly 17 percent of special education costs in the county. However, Ledbetter said that IDEA needs to be updated to provide more money to states in light of the fiscal crisis.
“I think rules and regulations in IDEA are very good to protect the rights of students, but where the big problem is is that it’s so underfunded,” said Ledbetter. “They say you need to provide this 100 percent, but we’ll only give you 17 percent to do it.”
An Uncertain Future
With the slow pace of economic recovery, few people are confident about what the future holds.
Pollack noted that everyone is concerned about what special education and families with special needs children will run up against in the years ahead.
“Santa Cruz County was very fortunate, but this is the calm before the storm and we’re all worried about the future,” said Pollack. “Even if the economy turns around, it’s our state budget that’s in debt.”
Meanwhile, Balance 4 Kids director George echoes the sentiments of many parents who believe the cuts that were made to places like the San Andreas Regional Center should not have occurred in the first place, regardless of the budget crisis.
“In the current times I do not think these cuts should have been made to a population that really can’t defend themselves…we need to take care of our weakest population and if we don’t, I think it reflects very badly on us.”
During her 19 years, Wendy Serrano, who loved to watch cartoons and play video games, participated in the Special Olympics as a way to overcome social obstacles and form friendships. Her mother, Judith, is saddened that both during her daughter’s life, and now that she has passed away, the reality of paying for the care of a special needs child has ultimately prevented her from giving Wendy the best life possible.
“She wanted so many things when she was alive that I couldn’t afford, and now that she is not here it hurts,” Serrano said. “Now that she’s gone I feel guilty that I couldn’t get those for her.”
If you would like to make a donation to the Serrano family to help cover the costs of their daughter’s funeral, please send a check to Judith Serrano at: 3265 26th St. Apt # 23, San Francisco, CA, 94110.