CSAAC: Epidemic Issues - Health Executive - RedCoat Publishing - Inside Healthcare

Mark Twain popularized the saying, “There are three kinds of lies: lies, damned lies, and statistics.” But with 1 out of 150 Americans born this year to be diagnosed on the autism spectrum, if we treat that statistic as a lie, we would only be lying to ourselves.

“I don’t know if the service industry or the government is prepared to handle the level of services that will be needed for individuals diagnosed with autism. Even if we discover a link or cause, as a society, we still must support the service needs of these individuals,” said Ian Paregol, executive director of Maryland’s Community Services for Autistic Adults and Children (CSAAC). “Our challenge is getting enough funding targeted to meet the needs of the population impacted by autism and making sure they have a voice.”

Ian Paregol, executive director

CSAAC is a state-funded human services agency for people diagnosed with autism. The organization supports approximately 350 people and operates 52 residences and three school sites. Originally created in 1979 as a service for adults, CSAAC now serves children as well. It is the only human service provider in Maryland with programs designed for individuals impacted by autism ranging from pre-school through retirement.

Autism is a complex brain disorder that affects communication, social interaction, and limits ones areas of interest. Typically, behavioral challenges are present as well. There is no cure, and despite suspicions about mercury in vaccines, no cause has been irrefutably identified. CSAAC was created with the mission of bringing people with autism back to their community and out of institutions. Although there are different levels of severity, many people with autism can become productive members of the workforce. Heightened media awareness of the severity of the situation has helped CSAAC spread the word about its own efforts, but Paregol said there is still a lot to do.

CSAAC is actively trying to strengthen ties with the local business community. The organization is affiliated with a number of businesses, creating partnerships designed for the mutual benefit of both parties. In the end, it is individuals whom CSAAC serves that reap the rewards, which include increased philanthropic support and opportunities for work through CSAAC’s supported employment program.

“We don’t want the individuals we support limited to four walls. We know that individuals with autism can be valuable members of the community at large, working, recreating, and interacting with people in their communities,” said Paregol.

CSAAC is working to educate legislators on the importance of increased state support. The organization controls costs by having a thin administrative structure. Most of its labor costs are related to dedicated direct care staffers working with individuals. When necessary, CSAAC seeks additional grants to supplement programs not covered by regular state funding. This includes funding for recreational programs, IT, and an organizational nutritionist.

The organization also found the state and county to be receptive partners when it came to funding its new Jane Salzano Center for Autism. Maryland’s state government contributed 75% of the cost, Montgomery County accounted for 20%, and community supporters funded the balance. This world-class facility will include a training center for adults with autism and a training institute for autism professionals, as well as recreation space, multipurpose rooms, and an autism resource library.

There is a simple reason for the investment. As a national model for others serving this population, CSAAC receives many inquires for help in improving service quality. In response, its training institute will offer seminars and classes to other organizations and their direct care staff, both local and out of state. This will allow caregivers around the country to benefit from CSAAC’s 30 years of experience in the field and help close the gap between the number of those needing services and the number of qualified caregivers.

“Along with the need for more services, more people will need to be trained in caring for these individuals,” Paregol said. “The fear is that with a massive increase in the number of persons who need services, the model of care could slip back toward institutionalization. We want to make sure other providers know that community-based programs work and result in lives rich with opportunities.”

Another CSAAC initiative funded by a special grant, this time from the Jim and Carol Trawick Foundation, was an IT upgrade. CSAAC wants to link all of the organization’s remote sites and administrative offices through new computers and the CareMatic case management system.

The investment will give CSAAC’s staff better tools for communication, review of client records, request processing, schedule management, incident reporting, and development of instructional programming for those served. This year, the organization will begin pilot testing the program in several of its facilities.

“The new system will allow for the electronic collection and evaluation of data and will enable the analysis of trends in medication, supportive techniques, and behavioral programming,” Paregol said. “These results can be monitored to ensure we are meeting individualized and organization-wide established goals and objectives.”

But the biggest issue for CSAAC and the people it serves is working with legislators and civic leaders to establish enough funding and support for the community-based model of care to flourish. With the number of autistic births now at epidemic proportions, lack of public support could prevent some individuals with autism from receiving the quality of care needed to help them be productive members of society.

Although CSAAC is hopeful the root cause of the disorder will be found and participates in early intervention research programs, ensuring that support services are not lacking is Paregol’s main concern.

“Autism is a hot topic, but persons who are unaffected by autism rarely understand its significant impact. It is critical that society recognizes that individuals with autism can be successful and involved members of their communities,” he said.

“Legislators also need to understand that a large pool of individuals will be entering and straining a system already near capacity, and the need for supports and progressive human services will only continue to grow.”

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