By Miriam Falco, CNN, November 30, 2009
STORY HIGHLIGHTS:
- Children in trial were between 1 1/2 and 2 1/2 at the beginning of study
- Half of kids in study received a therapy that emphasized adult-directed play time
- Kids in new therapy group increased IQ by nearly 18 points, higher than traditional group
- "Early intervention can be very effective for toddlers with autism," says study author
STORY:
Researchers have shown for the first time that if a child is diagnosed with autism as early as 18 months of age, offering the toddler age-appropriate, effective therapy can lead to raised IQ levels and improved language skills and behavior.
"Early intervention can be very effective for toddlers with autism," says Geraldine Dawson, chief science officer of the advocacy group Autism Speaks, and one of the two lead authors of a study published Monday in the journal Pediatrics.
Since 2007, pediatricians have been told to screen 18-month-old children for autism. But what the next step is when such a young child is diagnosed has not been clear.
"It's crucial, if we're going to offer screening at such a young age, that we can offer an intervention, and now we know we have methods that are effective," says Dawson.
She adds, "This is the first controlled trial in children under the age of two-and-a-half."
While Dawson was at the University of Washington, she and co-study author Sally Rogers from the University of California-Davis M.I.N.D. Institute devised the trial involving 48 children with autism.
All the children in the trial were between 1 1/2 and 2 1/2 years old at the beginning of the study. Half of the children were given community-based interventions or therapies and the other half were enrolled in a 20-hour per week intervention program called "Early Start Denver Model" (ESDM), developed by Rogers.
The goal of this research was to determine how much the debilitating effects of autism can be prevented or reduced.
ESDM was designed to address the needs of toddlers with autism as young as 12 months old, and it is delivered by trained therapists and their parents in a very natural setting -- the child's own home -- with children sitting on the floor and playing, rather than having a more adult-directed therapy.
"It's a very pleasing kind of therapy, kids are happy. It is play, and it can happen everywhere," Rogers explains. Dawson adds that this type of intervention builds on a fun, positive relationship with the therapist. This is a contrast to traditional Applied Behavioral Analysis (ABA), which is delivered at a desk, with the child sitting next to the teacher or therapist, who breaks down complex tasks into small components and then gives tangible reinforcements.
At the end of two years, all of the children showed improvements. But children in the ESDM group had increased their IQ by nearly 18 points -- 10 points higher than the children getting the standard autism therapy offered in the community. Scores for listening and understanding as well as motor skills and self-care skills were all higher in the ESDM group.
"Many of the children had virtually caught up to the typical kids their age," says Dawson.
Rogers says parents can pick up the ESDM therapy methods quite easily.
"They can learn this within six hours of working with therapists," she says.
Then parents can use the skills in everyday settings, not just during specific therapy sessions.
The study's authors also noted that the children in the ESDM group required only 15 hours of weekly intervention with a therapist, compared with the usual 40 recommended hours. This can have a significant economic impact on families. In 2006, a Harvard study estimated the lifelong cost of care for person with autism is more than $3 million.
Children with autism can have one of several complex neurological disorders, which lead to social impairments, communication difficulties and restrictive and repetitive behaviors. While the cause of autism in not yet known -- genetics and environmental triggers are believed to play a role -- the benefits of early intervention have been shown to reduce disruptive behaviors and teach the child skills that will lead to greater independence as he or she gets older.
There is no known cure for autism. The researchers of this study are quick to point out this they didn't cure any children, either. The subjects of the study still have autism, although it may be in a milder form.
In 2007, the American Academy of Pediatrics recommended that all children be screened for autism at the ages of 18 months and 24 months. A report published in their journal, Pediatrics, that year said that several studies showed that the Denver model was an effective treatment, but that "controlled studies are lacking" to prove its efficacy. This new study does just that. Researchers and advocacy groups alike stress treatments need to be scientifically verified before they can be recommended on a large scale.
"This is a good-news story" says Dr. Fred Volkmar, director of Yale University's Child Study Center and an autism expert.
"Quite often the [autism] field is splintered," says Brenda Smith Myles, also an autism expert and spokeswoman for the Autism Society of America. "I think on this topic, you will see a lot of cohesiveness."
Volkmar says this is a "well-done study, an important study." He says it shows that by effectively intervening at this young age, it is possible to prevent some of the early problems autism causes.
Rogers acknowledges that this study is only the first step. "Every piece of science needs to be replicated before it becomes fact, so we are currently doing a replication study," she said.
Tuesday, December 1, 2009
Saturday, October 3, 2009
Federal Lawsuit to Stop Cuts in Homecare to 130,000 Californians Filed Today
California Chronicle, 10/1/09
Seniors, people with disabilities who rely on IHSS Services face a humanitarian disaster, say advocates.
San Francisco – Several individuals needing critical assistance to remain safely in their homes, advocates for seniors and people with disabilities, and the unions whose members provide care, today filed suit in federal court in San Francisco to prevent impending cuts in the "In-Home Supportive Services" program, known as IHSS. The class action lawsuit is filed on behalf of four low-income Californians who need IHSS to remain safely at home. The plaintiffs include two children with disabilities who need special care, an 81 year old senior who needs IHSS to remain in her apartment, and a young man with autism and bi-polar disorder whose IHSS provider assists him with basic tasks.
The cuts in IHSS services are scheduled to take effect November 1, 2009. At least 40,000 people will lose services entirely and an additional 97,000 will have their services cut sharply. Among the services to be cut are help with cooking, food shopping, cleaning and assistance to medical appointments – cost-effective services which frail seniors and those with disabilities depend on to avoid more costly placement in institutions such as nursing homes.
The plaintiffs in the lawsuit will ask the federal court to issue an injunction to stop the IHSS cuts and avert what Margaret Baran, executive director of the San Francisco IHSS Consortium, said will be a "humanitarian disaster." Other local officials predict that cutting services to this many people will flood emergency rooms and Adult Protective Service. Evie Goldberg, a Los Angeles social worker for 30 years, summarized her experience starkly: "People who are nourished by IHSS, particularly when frail and older, live longer. Those without it don´t live as long."
Experts point out that the planned cutbacks will not save the State money in the long run. "It is less costly to care for people at home. A 2006 study showed that the average… public expenditure on home…based (Medicaid) services is $44,000 less than for a person receiving institutional services," stated Mitch LaPlante, leading disability researcher, University of California at San Francisco, in court papers.
The lawsuit alleges that the IHSS cutbacks will violate the federal constitutional due process protections, the Medicaid Act, and the Americans with Disabilities Act. "The purpose of the ADA is to eliminate discrimination against people with disabilities and these cuts will result in increased segregation and diminution of rights," asserted Paula Pearlman, executive director of the Disability Rights Legal Center.
"The proposed cuts are especially biased against people with mental illness, developmental disabilities and traumatic brain injury, who may need help just as much as people with physical disabilities," said Melinda Bird of Disability Rights California, lead counsel in the case.
The lawsuit was filed by Disability Rights California, Disability Rights Legal Center, National Senior Citizens Law Center, the National Health Law Program and San Diego attorney Charles Wolfinger on behalf of the IHSS recipients. The law firm of Altshuler Berzon LLP is also counsel in the lawsuit, representing unions including five SEIU locals (SEIU – United Healthcare Workers, SEIU – United Long Term Care Workers, and SEIU Local 521) United Domestic Workers-AFSCME, California United Homecare Workers (CUHW), and United Domestic Workers-AFSCME, whose members are IHSS caregivers and attendants.
An October 1 press conference featured a case summary by Melinda Bird, and the expert opinions of Lee Collins, director of the San Luis Obispo Department of Social Services; Donna Calame, executive director of the San Francisco IHSS Public Authority; and Ann Guerra, executive director of the Nevada-Sierra Regional IHSS Public Authority.
The complaint in this case, V.L., by and through his guardian ad litem Nancy Lagahid, et al. v. John A. Wagner, Director of the California Department of Social Services, et al. and associated declarations and other information will be posted on Disability Rights California´s website as soon as they are available: www.disabilityrightsca.org.
Seniors, people with disabilities who rely on IHSS Services face a humanitarian disaster, say advocates.
San Francisco – Several individuals needing critical assistance to remain safely in their homes, advocates for seniors and people with disabilities, and the unions whose members provide care, today filed suit in federal court in San Francisco to prevent impending cuts in the "In-Home Supportive Services" program, known as IHSS. The class action lawsuit is filed on behalf of four low-income Californians who need IHSS to remain safely at home. The plaintiffs include two children with disabilities who need special care, an 81 year old senior who needs IHSS to remain in her apartment, and a young man with autism and bi-polar disorder whose IHSS provider assists him with basic tasks.
The cuts in IHSS services are scheduled to take effect November 1, 2009. At least 40,000 people will lose services entirely and an additional 97,000 will have their services cut sharply. Among the services to be cut are help with cooking, food shopping, cleaning and assistance to medical appointments – cost-effective services which frail seniors and those with disabilities depend on to avoid more costly placement in institutions such as nursing homes.
The plaintiffs in the lawsuit will ask the federal court to issue an injunction to stop the IHSS cuts and avert what Margaret Baran, executive director of the San Francisco IHSS Consortium, said will be a "humanitarian disaster." Other local officials predict that cutting services to this many people will flood emergency rooms and Adult Protective Service. Evie Goldberg, a Los Angeles social worker for 30 years, summarized her experience starkly: "People who are nourished by IHSS, particularly when frail and older, live longer. Those without it don´t live as long."
Experts point out that the planned cutbacks will not save the State money in the long run. "It is less costly to care for people at home. A 2006 study showed that the average… public expenditure on home…based (Medicaid) services is $44,000 less than for a person receiving institutional services," stated Mitch LaPlante, leading disability researcher, University of California at San Francisco, in court papers.
The lawsuit alleges that the IHSS cutbacks will violate the federal constitutional due process protections, the Medicaid Act, and the Americans with Disabilities Act. "The purpose of the ADA is to eliminate discrimination against people with disabilities and these cuts will result in increased segregation and diminution of rights," asserted Paula Pearlman, executive director of the Disability Rights Legal Center.
"The proposed cuts are especially biased against people with mental illness, developmental disabilities and traumatic brain injury, who may need help just as much as people with physical disabilities," said Melinda Bird of Disability Rights California, lead counsel in the case.
The lawsuit was filed by Disability Rights California, Disability Rights Legal Center, National Senior Citizens Law Center, the National Health Law Program and San Diego attorney Charles Wolfinger on behalf of the IHSS recipients. The law firm of Altshuler Berzon LLP is also counsel in the lawsuit, representing unions including five SEIU locals (SEIU – United Healthcare Workers, SEIU – United Long Term Care Workers, and SEIU Local 521) United Domestic Workers-AFSCME, California United Homecare Workers (CUHW), and United Domestic Workers-AFSCME, whose members are IHSS caregivers and attendants.
An October 1 press conference featured a case summary by Melinda Bird, and the expert opinions of Lee Collins, director of the San Luis Obispo Department of Social Services; Donna Calame, executive director of the San Francisco IHSS Public Authority; and Ann Guerra, executive director of the Nevada-Sierra Regional IHSS Public Authority.
The complaint in this case, V.L., by and through his guardian ad litem Nancy Lagahid, et al. v. John A. Wagner, Director of the California Department of Social Services, et al. and associated declarations and other information will be posted on Disability Rights California´s website as soon as they are available: www.disabilityrightsca.org.
Tuesday, September 22, 2009
More quick facts on Autism
Taken from 9/18/09 Sacramento Bee article by Louis A. Vismara:
- Autism remains the fastest-growing developmental disability in California and the nation, diagnosed in one of every 150 children.
- If the trend continues, it's estimated that the state's regional centers may face demands for services from as many as 70,000 people of all ages with autism by 2012.
- About 90 percent of autistic adults are unemployed. In part, that's because of lack of opportunity and training.
Budget woes will leave families without respite care
By Troy Anderson, Contra Costa Times Staff Writer
Posted: 09/20/2009
With a 2-year-old son suffering from a genetic disorder that leaves him vulnerable to accidents, Tarzana residents Lance and Samantha Reiss rely heavily on a state-funded program that helps them care for the boy while raising two other children.
Until a month ago, the Reiss family received 130 hours a month of state-funded respite care under a program that helps families raise disabled children.
But after the state's latest round of budget cuts, the family's respite care hours were reduced to 50 and are expected to be eliminated altogether by Oct. 14.
Jake Reiss has Apert syndrome, a genetic disorder that causes malformed skulls, hands and feet. The sutures in his skull were closed when he was born, requiring head surgery, and he was also born with fused fingers and webbing between his toes.
Without the respite caregiver, Samantha said her son may not get the help he needs to attend preschool safely.
"If he were to hit his head hard, it could cause some damage," said Samantha, 36. "That's what we're receiving respite care for, an extra set of hands to make sure he's always safe."
The Reisses are among thousands of families with developmentally disabled children who are beginning to feel the pain of the state budget cuts. Without these services, families might need to place their children in institutions where care is more expensive and inadequate, disability advocates say.
Nancy Lungren, spokeswoman for the state Department of Developmental Services, said $384 million was cut from her department's $4.7 billion budget. The cuts were made after a series of community meetings.
"Even though there are more and more people with developmental disabilities ... we can't serve everybody with scarce resources," she said. "So we had to focus on the most disabled with the greatest needs (and) we had to make these really difficult choices."
But some advocates say the cuts affecting the disabled community were made in many different state agencies, adding up to a much larger hit.
Jordan Lindsey, director of policy at the California Association for Health Care Services at Home, estimates the recent budget actions have cut $3.5 billion in a variety of services to people with disabilities.
"They are being cut 10 percent here, 10percent there, and people may not understand if you add it all together all of a sudden you are taking away a huge portion of the individual services that allow them to live in the community with a meaningful, productive life," Lindsey said.
Aaron McLear, spokesman for Gov. Arnold Schwarzenegger, disputes that estimate, saying cuts in services to people with disabilities total only $1.5 billion.
The cuts, he said, were necessary to help the state overcome massive budget problems.
"We had a huge shortfall this year - about a $60 billion deficit over the course of a year-and-a-half," McLear said. "We solved some of it through budget cuts and some through temporary tax increases.
"We had more tax increases on the ballot, but voters rejected that. We can only spend money we have and just like every California business and family, we had to cut back."
The cuts come as the number of people served by DDS has grown from 146,000 in 1997 to more than 240,000 today.
Under the Lanterman Act, DDS is responsible for ensuring people with developmental disabilities receive the services they need to live independent and productive lives. These disabilities include mental retardation, cerebral palsy, epilepsy, autism and related conditions.
The services are provided by four state-operated development centers and two community facilities, and under contract through a network of 21 nonprofit regional centers.
Lindsey said the families that rely on these services are "terrified now" as the cuts go into effect.
"At one time in California, we made it a priority to ensure people with developmental disabilities were going to receive the necessary services so they would no longer be in fear of being forced into an institution, or being forgotten in the community," Lindsey said.
"Although that was at one time a priority, we are now leaving those individuals in the vulnerable position of fending for themselves."
Risa Berger, a 43-year-old Winnetka resident who has multiple sclerosis, relies on respite care to help herself and her 8-year-old son, Samuel, who has cerebral palsy.
The respite caregiver gives her a break and helps her bathe her son, take him to his soccer games, family dinners and other activities.
"When you spend your whole life working, paying taxes and doing what you are supposed to do, and then when you need something (these cuts) are like someone coming up and slicing your Achilles' heel with a razor blade," Berger said.
Lindsey said his association is especially concerned about the cuts in respite care because the service allows many people with disabilities to live independently.
Under the new rules, families can receive no more than 21 days of out-of-home respite services in a year, or 90 hours of in-home respite services in a three-month period.
"You can't have unlimited respite care for everyone," Lungren said.
"We had to cut there as well as other places."
But under certain circumstances where respite care is "absolutely necessary," Lungren said parents can appeal any decision by a regional center restricting care.
Lindsey said the association is supporting legislation by Assemblyman Jared Huffman, D-San Rafael, that would lift the cap on respite care and replace it with a percentage reduction, spreading out the impact more equitably. The bill did not pass last session, but Huffman intends to reintroduce it next session.
"They are cutting from the places where people need help the most," Samantha Reiss said. "We're not desperate, but I could never afford all of the services he gets. ... I can't even imagine what is happening to people who are worse off than we are."
Posted: 09/20/2009
With a 2-year-old son suffering from a genetic disorder that leaves him vulnerable to accidents, Tarzana residents Lance and Samantha Reiss rely heavily on a state-funded program that helps them care for the boy while raising two other children.
Until a month ago, the Reiss family received 130 hours a month of state-funded respite care under a program that helps families raise disabled children.
But after the state's latest round of budget cuts, the family's respite care hours were reduced to 50 and are expected to be eliminated altogether by Oct. 14.
Jake Reiss has Apert syndrome, a genetic disorder that causes malformed skulls, hands and feet. The sutures in his skull were closed when he was born, requiring head surgery, and he was also born with fused fingers and webbing between his toes.
Without the respite caregiver, Samantha said her son may not get the help he needs to attend preschool safely.
"If he were to hit his head hard, it could cause some damage," said Samantha, 36. "That's what we're receiving respite care for, an extra set of hands to make sure he's always safe."
The Reisses are among thousands of families with developmentally disabled children who are beginning to feel the pain of the state budget cuts. Without these services, families might need to place their children in institutions where care is more expensive and inadequate, disability advocates say.
Nancy Lungren, spokeswoman for the state Department of Developmental Services, said $384 million was cut from her department's $4.7 billion budget. The cuts were made after a series of community meetings.
"Even though there are more and more people with developmental disabilities ... we can't serve everybody with scarce resources," she said. "So we had to focus on the most disabled with the greatest needs (and) we had to make these really difficult choices."
But some advocates say the cuts affecting the disabled community were made in many different state agencies, adding up to a much larger hit.
Jordan Lindsey, director of policy at the California Association for Health Care Services at Home, estimates the recent budget actions have cut $3.5 billion in a variety of services to people with disabilities.
"They are being cut 10 percent here, 10percent there, and people may not understand if you add it all together all of a sudden you are taking away a huge portion of the individual services that allow them to live in the community with a meaningful, productive life," Lindsey said.
Aaron McLear, spokesman for Gov. Arnold Schwarzenegger, disputes that estimate, saying cuts in services to people with disabilities total only $1.5 billion.
The cuts, he said, were necessary to help the state overcome massive budget problems.
"We had a huge shortfall this year - about a $60 billion deficit over the course of a year-and-a-half," McLear said. "We solved some of it through budget cuts and some through temporary tax increases.
"We had more tax increases on the ballot, but voters rejected that. We can only spend money we have and just like every California business and family, we had to cut back."
The cuts come as the number of people served by DDS has grown from 146,000 in 1997 to more than 240,000 today.
Under the Lanterman Act, DDS is responsible for ensuring people with developmental disabilities receive the services they need to live independent and productive lives. These disabilities include mental retardation, cerebral palsy, epilepsy, autism and related conditions.
The services are provided by four state-operated development centers and two community facilities, and under contract through a network of 21 nonprofit regional centers.
Lindsey said the families that rely on these services are "terrified now" as the cuts go into effect.
"At one time in California, we made it a priority to ensure people with developmental disabilities were going to receive the necessary services so they would no longer be in fear of being forced into an institution, or being forgotten in the community," Lindsey said.
"Although that was at one time a priority, we are now leaving those individuals in the vulnerable position of fending for themselves."
Risa Berger, a 43-year-old Winnetka resident who has multiple sclerosis, relies on respite care to help herself and her 8-year-old son, Samuel, who has cerebral palsy.
The respite caregiver gives her a break and helps her bathe her son, take him to his soccer games, family dinners and other activities.
"When you spend your whole life working, paying taxes and doing what you are supposed to do, and then when you need something (these cuts) are like someone coming up and slicing your Achilles' heel with a razor blade," Berger said.
Lindsey said his association is especially concerned about the cuts in respite care because the service allows many people with disabilities to live independently.
Under the new rules, families can receive no more than 21 days of out-of-home respite services in a year, or 90 hours of in-home respite services in a three-month period.
"You can't have unlimited respite care for everyone," Lungren said.
"We had to cut there as well as other places."
But under certain circumstances where respite care is "absolutely necessary," Lungren said parents can appeal any decision by a regional center restricting care.
Lindsey said the association is supporting legislation by Assemblyman Jared Huffman, D-San Rafael, that would lift the cap on respite care and replace it with a percentage reduction, spreading out the impact more equitably. The bill did not pass last session, but Huffman intends to reintroduce it next session.
"They are cutting from the places where people need help the most," Samantha Reiss said. "We're not desperate, but I could never afford all of the services he gets. ... I can't even imagine what is happening to people who are worse off than we are."
Friday, September 4, 2009
How one agency's cuts point to California's bleak future
By Chris O'Brien
Mercury News Columnist
I am feeling more bleak than ever about the future of my adopted home state.
Years of budget lunacy in Sacramento culminated in a series of catastrophic cuts made this summer. It's unlikely that any part of state government escaped the hatchet. I'll leave it to historians to sort out just how badly we were failed by our governor and legislators.
But it's all too easy to forget, amid all the talks of billions cut here and billions cut there, the impact of each cut, and how those cuts may eventually make our dire budget situation even worse. This situation did more than just demonstrate the madness of the short-term thinking that drove the cuts. It provided a stark example of how, by choosing to focus on cutting rather than investing, we, the people and the politicians, could end up paying more in the long run to deal with our problems.
In this case, I'm talking about the brutal reductions made to early intervention services for at-risk and developmentally delayed children under the age of 3.
I happen to know a fair bit about this subject because my son received these state-funded services between the ages of 18 months and 3 years. Liam is now 6 years old and has been diagnosed as high-functioning autistic. Thanks to those early intervention services, he's now in first grade at a mainstream elementary school.
Understanding the impact of these cuts is difficult because the state's system for providing these services is complex. But let me walk you through the maze.
At the top is the California Health and Human Services Agency. Under the CHHS is the Department of Developmental Services. The DDS doles out money to 21 nonprofit regional centers that serve 244,000 adults and children with various degrees of disabilities.
Back in 2003, when Liam was found to have speech and other developmental delays, we were referred to the Regional Center of the East Bay. Through the regional center, Liam received speech and occupational therapy that put him on the path to closing the development gap with his peers.
But it's just such services that are now being cut. And because I know how invaluable they are, my heart breaks for all the families that won't receive them.
The folks who run DDS and an advisory task force have been heroically trying to make the best of a horrific situation. The agency projected that the number of folks it would serve this year would increase by 12,800. But rather than getting a budget increase to cover that growth, which DDS estimated would run about $384 million, the agency got a bump of only $22 million to its $4.7 billion budget, so it needs to find savings to make up the difference. The agency convened a large number of stakeholders to try to find the most humane solution.
"How can we do the least harm?" said Julia Mullen, deputy director of the community services and support division at DDS. Perhaps we need to adopt that phrase as our state motto.
The political insistence on cutting put the department in the impossible position of trying to decide how to split the baby. For which group of people with autism, epilepsy or cerebral palsy do you reduce services? The solution was painful. The department focused on three categories of kids it serves. The first are kids who are at risk, perhaps because of a problem at birth, but have not shown a delay. California was one of only six states that served these kids. But no more.
The second category are kids who come to the regional centers after age 2 and are less than 50 percent delayed in one area, such as speech.
Both groups of kids will no longer receive direct services such as speech, occupational or physical therapy.
Fortunately, the agency managed to shift some money around to create a new prevention program for these kids. The new program won't provide services, but the kids will be assigned a case manager to watch them closely to see if they're getting worse, and if so, pull them into the system.
"We wanted to have a safety net," Mullen said. "To make sure they did not fall through the cracks."
This carefully thought-out plan has been further complicated by our knife-wielding governor's decision to make a last-minute line-item cut that sliced another $50 million off the DDS budget. The agency is still weighing how to take that into account if it withstands a legal challenge.
From a moral perspective, the choice forced on the agency is indefensible. Rather than taking aggressive preventive action, the department must now gamble with these kids' lives and hope as few as possible develop more severe delays.
From a treatment perspective, you'd be hard pressed to find any expert who would advocate a "let's see what happens" approach. Mullen said the agency is going to be extremely vigilant when it comes to watching these kids for any signs they're regressing.
But beyond all that, I'm troubled by the potential economics. Researchers are clear that early and preventive treatment saves money down the road. Conversely, by waiting, fewer kids will come into the system but they will likely have more severe issues, and thus will likely cost more to treat.
"The state is essentially disinvesting in young children," said Steven Barnett, co-director of the National Institute for Early Education Research at Rutgers University. "And that will result in more expenditures later on."
So this is the economic bargain our governor and Legislature have asked us to make: Let's hope that the higher expense of waiting to treat fewer kids doesn't eat up all the money we're saving by cutting early intervention services.
I can't help but think what my family would have done had we been told that our son wouldn't be eligible because he was only 40 percent delayed. Because our insurance didn't cover such direct therapy, we probably would have borrowed thousands of dollars to pay for services out of pocket.
This is the grim choice the state will be forcing on to thousands of families. So let's be clear about one thing: These cuts are not really cuts. As a society, we will still end up with costs, directly or indirectly, down the road. These kids will go to schools, where they may require more services or support. Or they'll be less productive when they grow up and can't get jobs.
And in the end, this is only one of many such cuts enacted. Repeated over the billions of dollars sliced from the state budget, I wonder if the governor or any of our legislators know how much the cuts today will end up really costing tomorrow.
In truth, none of us knows. And that's what has made me doubtful that the Golden State will ever regain its luster.
Contact Chris O'Brien at (415) 298-0207 or cobrien@mercurynews.com. Follow him on Twitter at twitter.com/sjcobrien and read his blog posts at www.siliconbeat.com.
Mercury News Columnist
I am feeling more bleak than ever about the future of my adopted home state.
Years of budget lunacy in Sacramento culminated in a series of catastrophic cuts made this summer. It's unlikely that any part of state government escaped the hatchet. I'll leave it to historians to sort out just how badly we were failed by our governor and legislators.
But it's all too easy to forget, amid all the talks of billions cut here and billions cut there, the impact of each cut, and how those cuts may eventually make our dire budget situation even worse. This situation did more than just demonstrate the madness of the short-term thinking that drove the cuts. It provided a stark example of how, by choosing to focus on cutting rather than investing, we, the people and the politicians, could end up paying more in the long run to deal with our problems.
In this case, I'm talking about the brutal reductions made to early intervention services for at-risk and developmentally delayed children under the age of 3.
I happen to know a fair bit about this subject because my son received these state-funded services between the ages of 18 months and 3 years. Liam is now 6 years old and has been diagnosed as high-functioning autistic. Thanks to those early intervention services, he's now in first grade at a mainstream elementary school.
Understanding the impact of these cuts is difficult because the state's system for providing these services is complex. But let me walk you through the maze.
At the top is the California Health and Human Services Agency. Under the CHHS is the Department of Developmental Services. The DDS doles out money to 21 nonprofit regional centers that serve 244,000 adults and children with various degrees of disabilities.
Back in 2003, when Liam was found to have speech and other developmental delays, we were referred to the Regional Center of the East Bay. Through the regional center, Liam received speech and occupational therapy that put him on the path to closing the development gap with his peers.
But it's just such services that are now being cut. And because I know how invaluable they are, my heart breaks for all the families that won't receive them.
The folks who run DDS and an advisory task force have been heroically trying to make the best of a horrific situation. The agency projected that the number of folks it would serve this year would increase by 12,800. But rather than getting a budget increase to cover that growth, which DDS estimated would run about $384 million, the agency got a bump of only $22 million to its $4.7 billion budget, so it needs to find savings to make up the difference. The agency convened a large number of stakeholders to try to find the most humane solution.
"How can we do the least harm?" said Julia Mullen, deputy director of the community services and support division at DDS. Perhaps we need to adopt that phrase as our state motto.
The political insistence on cutting put the department in the impossible position of trying to decide how to split the baby. For which group of people with autism, epilepsy or cerebral palsy do you reduce services? The solution was painful. The department focused on three categories of kids it serves. The first are kids who are at risk, perhaps because of a problem at birth, but have not shown a delay. California was one of only six states that served these kids. But no more.
The second category are kids who come to the regional centers after age 2 and are less than 50 percent delayed in one area, such as speech.
Both groups of kids will no longer receive direct services such as speech, occupational or physical therapy.
Fortunately, the agency managed to shift some money around to create a new prevention program for these kids. The new program won't provide services, but the kids will be assigned a case manager to watch them closely to see if they're getting worse, and if so, pull them into the system.
"We wanted to have a safety net," Mullen said. "To make sure they did not fall through the cracks."
This carefully thought-out plan has been further complicated by our knife-wielding governor's decision to make a last-minute line-item cut that sliced another $50 million off the DDS budget. The agency is still weighing how to take that into account if it withstands a legal challenge.
From a moral perspective, the choice forced on the agency is indefensible. Rather than taking aggressive preventive action, the department must now gamble with these kids' lives and hope as few as possible develop more severe delays.
From a treatment perspective, you'd be hard pressed to find any expert who would advocate a "let's see what happens" approach. Mullen said the agency is going to be extremely vigilant when it comes to watching these kids for any signs they're regressing.
But beyond all that, I'm troubled by the potential economics. Researchers are clear that early and preventive treatment saves money down the road. Conversely, by waiting, fewer kids will come into the system but they will likely have more severe issues, and thus will likely cost more to treat.
"The state is essentially disinvesting in young children," said Steven Barnett, co-director of the National Institute for Early Education Research at Rutgers University. "And that will result in more expenditures later on."
So this is the economic bargain our governor and Legislature have asked us to make: Let's hope that the higher expense of waiting to treat fewer kids doesn't eat up all the money we're saving by cutting early intervention services.
I can't help but think what my family would have done had we been told that our son wouldn't be eligible because he was only 40 percent delayed. Because our insurance didn't cover such direct therapy, we probably would have borrowed thousands of dollars to pay for services out of pocket.
This is the grim choice the state will be forcing on to thousands of families. So let's be clear about one thing: These cuts are not really cuts. As a society, we will still end up with costs, directly or indirectly, down the road. These kids will go to schools, where they may require more services or support. Or they'll be less productive when they grow up and can't get jobs.
And in the end, this is only one of many such cuts enacted. Repeated over the billions of dollars sliced from the state budget, I wonder if the governor or any of our legislators know how much the cuts today will end up really costing tomorrow.
In truth, none of us knows. And that's what has made me doubtful that the Golden State will ever regain its luster.
Contact Chris O'Brien at (415) 298-0207 or cobrien@mercurynews.com. Follow him on Twitter at twitter.com/sjcobrien and read his blog posts at www.siliconbeat.com.
Monday, August 17, 2009
San Mateo County/Commission on Disabilities/Families and Youth with Disabilities Survey
In 2007, the Commission on Disabilities formed an ad hoc Youth with Disabilities Committee to improve services for individuals with a disability under the age of 25 in San Mateo County. Shortly thereafter, an online survey was distributed to refine the services. There was a total of 130 respondents and the following is the key survey feedback:
- Autism was far and away the most noted disability.
- The most important service categories are life and social skills training, speech therapy, and occupational therapy.
- 67% of the respondents rate recreational activities as ‘not so good’ or ‘poor’.
- 2% of the respondents rate the availability of safe, affordable, and accessible housing for individuals as ‘very good’ or ‘excellent’.
- 75% of the respondents rate the services offered at their school as ‘good’, ‘very good’, or ‘excellent’.
- 42% of the respondents rate health care services as ‘good’.
- A good majority of respondents rate advocacy, counseling, leveraging existing services, and early intervention as ‘extremely important’. -The 19-25 age range lack services compared to the 0-18 age range.
- The availability of public and affordable services to individuals with multiple disabilities is limited.
- Public transportation to services and multiple language services is limited.
Friday, July 3, 2009
Disability Services in San Mateo County
Abilities United (Formerly Community Association for Rehabilitation - CAR)
Services: Early Intervention Program, Milestones Preschool, Respite Services, After School Socialization, Adult Day Activities, Independent Living Services, Employment Services Computer Education and the Aquatic Services.
Contact Information: 525 East Charleston Road, Palo Alto, CA 94306, Tel: (650) 494-0550, Website: http://www.abilitiesunited.org/
Achievekids
Services: Mental Health Therapy and Special Education Programs Including: Behavioral Services Program, Speech/Language Therapy, Community Integration, Transititional Services, Technology Integration & Vocational Training.
Contact Information: 3860 Middlefield Road, Palo Alto, CA 94303, Tel: (650) 494-1200, Website: http://www.achievekids.org/
B.O.K. Ranch
Services: Provides Horseback Riding Lessons to Children and Adults with Special Needs.
Contact Information: 3674 Sand Hill Road, Woodside, CA 94062, Tel: (650) 366-2265, Website: http://www.bokranch.com/
California Relay Service
Services: Provides Specially-Trained Operators to Relay Telephone Conversations Back and Forth Between People Who Are Deaf, Hard of Hearing, or Speech-Disabled and all Those They Wish to Coomunicate With by Telephone.
Contact Information: Tel: (800) 735-2922, (TTY) (800) 735-2929, Website: http://www.ddtp.org/
California State Department of Rehabilitation
Services: Provides the Counseling, Testing, and Training Necessary for Physically or Mentally Disabled Persons to Become Competitively Employed.
Contact Information: 1065 E. Hillsdale Blvd, #403, Foster City, CA 94404, Tel: (Voice / TTY) (650) 358-4180, Website: http://www.rehab.ca.gov/
Canine Companions for Independence (CCI)
Services: Provides Highly Trained Assistance Dogs and Ongoing Support to Ensure QualityPartnerships.
Contact Information: 2965 Dutton Avenue, Santa Rosa, CA 95407, Tel: (800) 572-2275, (TTY) (707) 577-1756, Website: http://www.cci.org/
Center for Independence of the Disabled (CID)
Services: Housing Accessibility Modification, Independent Living Skills, Peer Counseling, Financial Benefits Counseling, Volunteers in Money Management, Shopping Assistance for Someone at Home, Personal Assistance Program, Client Assistance Program, Assistive Technology Program.
Contact Information: 1515 S. El Camino Real, Suite 400, San Mateo, CA 94402, Tel: (650) 645-1780, (TTY) (650) 522-9313, Website: http://www.cidsanmateo.org/
Services: Early Intervention Program, Milestones Preschool, Respite Services, After School Socialization, Adult Day Activities, Independent Living Services, Employment Services Computer Education and the Aquatic Services.
Contact Information: 525 East Charleston Road, Palo Alto, CA 94306, Tel: (650) 494-0550, Website: http://www.abilitiesunited.org/
Achievekids
Services: Mental Health Therapy and Special Education Programs Including: Behavioral Services Program, Speech/Language Therapy, Community Integration, Transititional Services, Technology Integration & Vocational Training.
Contact Information: 3860 Middlefield Road, Palo Alto, CA 94303, Tel: (650) 494-1200, Website: http://www.achievekids.org/
B.O.K. Ranch
Services: Provides Horseback Riding Lessons to Children and Adults with Special Needs.
Contact Information: 3674 Sand Hill Road, Woodside, CA 94062, Tel: (650) 366-2265, Website: http://www.bokranch.com/
California Relay Service
Services: Provides Specially-Trained Operators to Relay Telephone Conversations Back and Forth Between People Who Are Deaf, Hard of Hearing, or Speech-Disabled and all Those They Wish to Coomunicate With by Telephone.
Contact Information: Tel: (800) 735-2922, (TTY) (800) 735-2929, Website: http://www.ddtp.org/
California State Department of Rehabilitation
Services: Provides the Counseling, Testing, and Training Necessary for Physically or Mentally Disabled Persons to Become Competitively Employed.
Contact Information: 1065 E. Hillsdale Blvd, #403, Foster City, CA 94404, Tel: (Voice / TTY) (650) 358-4180, Website: http://www.rehab.ca.gov/
Canine Companions for Independence (CCI)
Services: Provides Highly Trained Assistance Dogs and Ongoing Support to Ensure QualityPartnerships.
Contact Information: 2965 Dutton Avenue, Santa Rosa, CA 95407, Tel: (800) 572-2275, (TTY) (707) 577-1756, Website: http://www.cci.org/
Center for Independence of the Disabled (CID)
Services: Housing Accessibility Modification, Independent Living Skills, Peer Counseling, Financial Benefits Counseling, Volunteers in Money Management, Shopping Assistance for Someone at Home, Personal Assistance Program, Client Assistance Program, Assistive Technology Program.
Contact Information: 1515 S. El Camino Real, Suite 400, San Mateo, CA 94402, Tel: (650) 645-1780, (TTY) (650) 522-9313, Website: http://www.cidsanmateo.org/
Children's Health Council
Services: Psychiatry, Psychology, Neuropsychology, Social Work, Education, Behavior Management, Marriage and Family Therapy, Speech and Language Therapy, Occupational Therapy & Art Therapy.
Contact Information: 650 Clark Way, Palo Alto, CA 94304, Tel: (650) 326-5530, Website: http://www.chconline.org/
Community Gatepath
Services: Children's Services (Early Intervention, Learning Links Preschool, Family Resource Center), Adult Services (Day Services, Vocational Services), Social Business Enterprises (Landscape, Production & Assembly, Staffing Services), Awareness (PigMillion Possibilities, Kids on the Block, Speakers Bureau).
Contact Information: 875 Stanton Road, Burlingame, CA 94010, Tel: (Voice/TTY) (650) 259-8500, Website: http://www.gatepath.com/
Family Housing and Adult Resources (FHAR)
Services: Residential Services, Independent Living Training and Supported Living Services & Vocational Services.
Contact Information: 20 E. 20th Avenue, San Mateo, CA 94403, Tel: (650) 403-0403, Website: http://www.fhar.org/
Golden Gate Regional Center (GGRC)
Services: Serves individuals with developmental disabilities and provides early intervention services to infants between birth and three years of age who are developmentally delayed or believed to be at high risk of having a developmental disability, and genetic counseling and testing for individuals at high risk of having a child with a disability.
Contact Information: 3130 La Selva Street, #202, San Mateo, CA 94403, Tel: (650) 574-9232, Website: http://www.ggrc.org/
Guide Dogs for the Blind, Inc.
Services: Offers guide dogs and training free-of-charge to blind and visually impaired people throughout the US and Canada.
Contact Information: 350 Los Ranchitos Road, San Rafael, CA 94903, Tel: (800) 295-4050, Website: http://www.guidedogs.com/
Hearing and Speech Center for Northern California
Services: Offers hearing testing and hearing aid services to children and adults of all ages.
Contact Information: 1234 Divisadero Street San Francisco, CA 94115, Tel: (415) 921-7658, (TTY) (415) 921-8990, Website: http://www.hearingspeech.org/
Hearing Loss Association of the Peninsula
Services: Provides assistance and resources for people with hearing loss and their families to learn how to adjust to living with hearing loss.
Contact Information: 1505 Ralston Avenue, Belmont, CA 94402, Tel: (650) 593-6760, http://www.hearingloss.org/
Kainos Home and Training Center
Services: Residential Living Skills Training, Independent Living Program, Vocational Training & Supported Employment.
Contact Information: 3631 Jefferson Avenue, Redwood City, CA 94062, Tel: (650) 363-2423, Website: http://www.kainosusa.org/
National Center for Equine Facilitated Therapy (NCEFT)
Services: Beneficial physical and occupational therapy and equine assisted activities for individuals with special needs.
Contact Information: 880 Runnymede Road, Woodside, CA 94062, Tel: (650) 851-2271, Website: http://www.nceft.org
Parca
Services: Residential programs, support for those living independently, respite care, before- and after-school child care, and family support and advocacy services.
Contact Information: 800 Airport Blvd., #320, Burlingame, CA 94010, Tel: (650) 312-0730, Website: http://www.parca.org
San Mateo County Health Department Aging and Adult Services
Services: serves as the area agency on aging for planning, coordination, funding, and advocacy for seniors and disabled adults in the county.
Contact Information: 225 - 37th Avenue, San Mateo, CA 94403, Tel: (800) 675-8437, (TTY) (800) 994-6166, Website: http://www.smhealth.org
San Mateo County Human Services Agency Vocational Rehabilitation Sevices (VRS)
Services: Helpds individuals with employment barriers and disabilities attain their maximum vocational potential through counseling, case management, assessment, and vocational training.
Contact Information: 550 Quarry Road, San Carlos, CA 94070, Tel: (650) 802-6482, Website: http://www.smchsavrs.org
San Mateo County Office of Education Special Education Services
Services: Provides special education programs for students whose needs cannot be met solely within their local school district.
Contact Information: 191 Twin Dolphin Drive, Redwood City, CA 94065, Tel: (650) 802-5460, (TTY) (650) 802-5480, Website: http://www.smcoe.k12.ca.us
Vista Center
Services: Social services, training in daily living skills, mobility training, support groups, computer classes, a low-vision clinic, store, youth group, and Braille classes for the visually impaired.
Contact Information: 2470 El Camino Real, #107, Palo Alto, CA 94306, Tel: (650) 858-0202, Website: http://www.vistacenter.org
Blog Source: Community Information Handbook 2009, A Joint Publication of the Penninsula Library System and the County of San Mateo Human Services Agency
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