Stakeholders Work Together to Ensure Effective Services

Creative Efforts Help Students with Autism

In August 1993, the California Department of Developmental Services reported a caseload of 4,911 individuals with autism. By 2007, that number had grown to 31,012—a nearly 600 percent increase. Given this trend, it is not surprising that discussions about autism spectrum disorder (ASD) invariably involve money, especially given the recent economic projections for ASD. According to Michael Ganz of the Harvard School of Public Health, the cost of taking care of someone with autism over a lifetime can reach $3.2 million. Ganz, the author of Understanding Autism, reports that this amount of money for an individual, “or $35 billion for society, consists of medical costs, such as doctors visits, medications and therapies; it consists of non-medical costs, such as adult care, childcare, special education; and it also consists of lost income—both parental lost income and the lost income of people with autism.” With budgets slashed and the number of children requiring autism services increasing, how can social service systems and school districts afford to provide the necessary and legally mandated treatment for this growing population?
On top of this question is the one involving litigation. As soon as they receive the diagnosis of autism for their child, parents often struggle to secure treatment and education that hold out the promise of a happy, independent life for their boy or girl. However, given the relative newness of the research (ASD was only identified in the 1940s) and the very recent spike in the number of people requiring services, it is not uncommon for parents to end up frustrated over their inability to find effective systems that can respond to their child’s needs. Out of this frustration, parents have clashed with school districts and special education programs—entities that are themselves struggling with limited resources while puzzling over how to address the needs of this exponentially increasing population. If the conflict comes to litigation, it is always expensive.

Facing Challenges Creatively 

However, Californians in the Central Valley have taken an inventive approach to addressing the very center of the storm: the nexus of cost, litigation,
and effective intervention services. And while it is rarely easy to develop a program that reconciles diverse interests, and the process for doing it is almost never clear, the results that have emerged from the Central Valley have been exemplary.
In 1994, the Central Valley’s Tri-County SELPA (Special Education Local Plan Area) was reeling in the aftermath of an expensive lawsuit over services for a young boy with autism. The boy’s parents did not think the school district had provided appropriate services for the child, and they wanted to be reimbursed for services they had sought independently. Managers at the area’s regional center, Valley Mountain Regional Center (VMRC), agreed with them. But the school district believed that it was, in fact, providing appropriate services.

Litigation happened.

Legal findings turned largely in favor of the district. However, when it was all over, then-SELPA director Dr. Sandee Kludt knew “this was not the best way to spend our resources,” and she vowed never again to see so much money spent and so much time consumed in court. So she set about finding a way to preclude that possibility.
Despite the fact that Kludt’s SELPA and VMRC had just sat on opposite sides of the courtroom, Kludt requested a meeting with Dr. Howard G. Cohen, VMRC’s clinical director at the time. She wanted to work with Cohen to find a way to stop using money “to line attorney’s pockets,” and instead use it “to get people together” by collaborating and blending funds to best serve children “in the most cost-effective way.” She told Cohen, “We can continue to go down this same road. I know how to prove that our programs and services are appropriate. I can staff for that. Or we can work together and do something different.”
As a result of that meeting, Dr. Cohen convinced VMRC Executive Director Richard Jacobs that closer cooperation and shared funding were worth exploring. Subsequently, key organizations and individuals who worked with, taught, and served children with ASD in California’s Central Valley—including parents—were brought together. Kludt and Cohen then sold them on the importance of developing a collaborative approach to providing and monitoring effective programs for children with ASD. Continuing to think creatively, they also contacted the very mother who sued the school; they asked her to be part of their effort to design a system for providing effective autism treatment—one that a mother would not be inclined to sue. From here, Autism Connection was born.

Using Persistence

Tara Sisemore-Hester, one of two coordinators of autism services at VMRC, remembers the initial difficulties. “All stakeholders came from different perspectives,” she recalls. “But we forged ahead and worked things out on a case-by-case basis.” The initial agreement took two years to develop.
VMRC’s Jacobs says that what ultimately convinced his agency’s senior managers and board of directors was the documented progress that youngsters were making. “It’s hard to argue with that kind of success,” he says.
Credit for this success belongs in large part to both Cohen and Kludt, says Jacobs. Howard Cohen had proven himself a passionate advocate for children with developmental disabilities and a strong believer in the positive—and life-long—benefits of early intervention services for children. VMRC was already implementing the research-based, intensive, in-home treatment program for ASD that was designed and pioneered by O. Ivar Lovaas from the University of California, Los Angeles (www.lovaas.com) and based on applied behavior analysis (ABA). In addition, Kludt was a leader among the state’s SELPA directors and a former member of VMRC’s Board of Directors. Both roles positioned her to understand the policy issues and to sell the idea of shared responsibility.

Making Bold Moves with Money

Probably the most innovative part of the Cohen-Kludt collaborative effort involved money. Legally, a regional center is only obligated to fund services for young children with autism in the Early Start program until they turn three. However, at Cohen’s urging VMRC agreed to split the cost of all early intervention services for autism prior to age five—an extra two years. This decision was important for a number of reasons. First, it helped better serve children, since research suggests that the narrow window of time when proven therapies are most effective is between the ages of three and five, especially for language development. Second, the extra funding made it possible for the school system—normally the entity that pays for autism services after a child turns three—to afford more and better supports for young children and their families. Third, it gave the regional center a formal role in determining and monitoring autism services for that age group. And finally, more effective services early on would presumably reduce future regional center costs in serving adults with ASD. This presumption was not unfounded. According to the Cambridge Center for Behavior Studies, effective early intervention can substantially reduce the need for specialized services in school and later in life for individuals with ASD. And the average savings to the public organizations that provide services to these individuals can be substantial, ranging, per individual, from $1,686,061 to $2,816,535 (www.behavior.org/autism).

Nonetheless, as Kludt recalls, the effort was a brave gamble. “The regional center had to bank on the belief that investing now would result in money saved in later years,” in terms of fewer and less intensive services needed for individuals with autism as adults. “There was also the belief that a collaborative approach would prevent, or lessen, future litigation.”

Although Kludt retired in December from her 30-year tenure as a SELPA director, she maintains her passion for building effective systems with “all key stakeholders working collaboratively toward the same end.” She encourages other collaborative efforts to be sure to involve parents and to view them as partners. In addition, Kludt encourages educational programs of all kinds to collect outcomes data on students. Important facts—demonstrable improvements in a child’s IQ scores, increased language skills, and the ability to function in less restrictive environments and to eventually succeed without an instructional assistant, for example—all “give you something to share with superintendents, with boards of school districts and regional centers. These data show how the money is being spent in cost-effective ways.”

Spreading Good Ideas

Other SELPAs, school districts, and regional centers in the state have learned from Autism Connection. Arguably, none has learned better than a group in Northern California. Dr. Patrick Maher, the developmental pediatrician at California’s North Bay Regional Center (NBRC), is happy to give credit to VMRC for inspiration, guidance, and help in creating his program, Autism Community Team, or ACT. In fact, he was happy he “did not have to start from scratch.”

NBRC’s ACT received its initial impetus in 2002 when the California Department of Developmental Services (DDS) published its best practice guidelines for autism, and NBRC found itself with money for implementing some of DDS’s recommendations. The center decided to focus on four: early intervention, coordinated services, seamless service delivery, and direct and constant family involvement—all things that VMRC had worked for years to develop.

So NBRC followed suit. With guidance from VMRC, Maher brought together SELPAs, county offices of education, family resource centers, vendors, speech and language therapists, occupational therapists, behavioral experts, early intervention specialists—nearly everyone concerned about services to children with autism. Together they created collaborative diagnostic clinics within the schools themselves.

According to Maher, before ACT was in place parents had to go to regional centers for certain services, and then to schools for other services. “It was not uncommon for the diagnoses and the recommended treatments to differ at best, and conflict at worst,” reports Maher. But the formation of ACT changed all of that. A child’s collaborative evaluation team—made up of educators, professionals from the regional center, and parents—now works out of the schools, making the school the only place parents need to go. The process of evaluating a child consists of the school psychologist first administering the ADOS [a special test for autism] and assessing the child in the areas of cognition and speech and language development. After that, the team meets to score the ADOS together. Then educators from the child’s school and the diagnostic team meet “along with the parents in the same place. All perspectives are considered,” says Maher, who stresses the advantage of “everyone [being] at the same table. Everyone works together to form an agreed-upon service plan that is consistent, efficient, and seamless. This is logical, but in Northern California it is new since 2003—and it has been very successful.”

ACT has realized its success for a number of reasons. First, ACT makes it possible for children to be diagnosed—and treated—earlier, thus supporting the all-important early intervention model. Then, ACT effectively coordinates services. Maher recalls that “before we [collaborated], we were very separate. There was a lot of scapegoating—case managers blaming schools for not doing enough, schools blaming regional centers for wanting to dump kids on them. Now as we work together we have come to appreciate each others’ limited resources. We understand how educational requirements differ from the requirements that direct regional center services.” Finally, ACT has created a structure for sharing not only costs, but other burdens, as well. Maher says that “of course everyone is worried about costs, worried about not having total control but still being responsible for the results. But the advantage of a collaborative approach is that decisions are made jointly, and so these worries end up being shared. And because the parents can discuss issues with everyone at the same time and are witness to how all of the professionals involved are doing their sincere best to determine the best set of services and treatments for their child, they are not worried about being kept in the dark or being deprived of appropriate services. This open process has created greater respect all around.”

The trend toward collaboration and blended funding for autism services may be gathering steam. Judy Holsinger, SELPA director for Sacramento County Office of Education, describes a new satellite program in her Natomas School District—one that is co-funded by Alta Resource Center and the district. In this program, all specialists work with case managers to coordinate autism interventions. The advantage of the approach, says Holsinger, is that “it provides inclusive settings for kids, a ‘wrap-around’ service, so that much of what the student needs is available in the same place. For children with autism—children who tend to thrive on consistency, predictability, and routine—this represents a significant benefit.”

Holsinger, too, speaks of this collaborative approach as “the ideal way not only to deliver services to students but also to build confidence with parents. They see the schools as trying to provide the best supports for their child. And considering the complicated lives they live in having to figure out how to care for a child who has a syndrome that, by its very nature, realizes itself differently in almost everyone who has it, a collaborative approach makes their complicated life just a little easier.” And everyone knows that there
are times when “just a little easier” can make a big difference for everyone involved.

 

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