Greater Awareness Brings Increased Demand for CARD's Expertise
With the increased awareness of autism, parents are no longer going years before having their children diagnosed. They now know a name for symptoms they see in their child; consequently, the reported incidence of autism is increasing. Some of the latest figures state that researchers believe classic or Kanner autism occurs in 1 in 1000 births, with the milder version, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) approaching 1 in 500 and the high functioning autism and Asperger Syndrome nearly 1 in 180.
These higher numbers mean increased demand for information, more medical supports, and better programs within the school system. Parents are being proactive, gaining more knowledge about the disability as well as their rights&endash;and schools and state systems are beginning to seek help in determining the best ways to serve the many families. More and more, they are seeking the help and expertise from the Center for Autism and Related Disabilities (CARD) staff at the Department of Child and Family Studies (CFS) at the Louis de la Parte Florida Mental Health Institute.
CARD-USF is one of six university-based comprehensive regional resource and training centers established by the Florida legislature to serve people with autism and their families. Under the leadership of executive director Glen Dunlap and co-directors Janine Peck and Lise Fox, the Center provides program development, training and support for individuals, families, professionals and peers of people with autism and related disabilities throughout eighteen Florida counties.
Direct assistance to families is a hallmark of CARD-USF. Families most often find out about CARD when their child receives a diagnosis of autism&endash;referrals may come from early intervention programs such as Zero-To-Three, pediatricians, psychologists, or school personnel. Mary-Kay Bunton-Pierce completes the intake process when families call CARD. "I ask for information about the individual's history and functioning, whether they've had prior interventions, and try to assess the family's circumstances," said Mary-Kay, "It is important to get as much information as possible so that we can best match the family with the services CARD provides." Some families simply want information, others require significant assistance to decrease behavior problems and improve their family's situation. CARD Family Support Specialists are assigned soon after intake, and meet with the family and other interested parties, typically visiting the home or school. Together, they identify issues and CARD staff makes recommendations that will increase support for the individual with autism or related disability.
CARD Goes to School
CARD's early intervention efforts connect families to additional supports children require as they get older, including educational needs. Support Specialists Suzanne Ather, Selina Bustamonte, Sandi Locklear, Mary Reed, Marjorie Russell and Suzanne Shahan work with schools in 18 counties across Florida, providing information to better expand school programs.
"The trend now is much less in thinking about where do we place the child, but what supports do they need in order to be successful," stated Mary Reed. Last year, a strong collaborative effort was made with the Sarasota County Schools when CARD was asked to evaluate a school in the district. CARD was interested in the chance to use the school as a model prototype. Findings from that evaluation will be used for a similar project in Pasco County this August.
CARD's recommended school supports often include increased exposure to general education students as a means to promote further social skill development. The buddy program pairs a student who has special needs with general education students in a reverse mainstream situation for a specific amount of time each week. "The development of friendships by students with significant disabilities is often neglected because educators and support personnel focus their efforts on functional and academic skill development." stated Marjorie Russell. "Research has indicated that friendships for students with disabilities may be even more important than for more typical children because of their increased needs for language, cognitive, social, and academic development. The interactions between the students have proven to be beneficial to all the children involved. With opportunities like this, we can help raise a generation of people more accepting of individuals with different strengths and challenges," she added.
Co-Director Janine Peck and Marjorie are creating a manual for establishing peer relationships, offering guidelines for teachers to follow. CARD staff members have also developed an on-going workshop for school district representatives. CARD hosts these events, while the participants determine the agenda; CARD provides the necessary resource information. "The benefits of these meetings is that representatives can hear that the issues everywhere are the same&endash;that they all share the same concerns and this is a place where they can exchange ideas and insights," said Mary.
Growing Up with Autism
This past year, CARD's ability to effectively support adults with autism at a systems level was greatly enhanced by the addition of Steve Newton. Steve comes to CARD with a long history of working within adult systems in the state of Oregon.
Janine stressed, "although we have always been committed to supporting all ages, it is now time to increase our capacity. What many people do not realize is that unlike schools, there is no entitlement for support or ongoing education once these individuals age out of the school system. Most of the individuals we serve do not stop needing support once they walk across that stage at graduation. CARD's mission includes working with the systems and families that will surround these individuals to help assure that they are afforded the supports and options for a productive and enjoyable lifestyle that so many of us take for granted."
In cooperation with CARD, several related projects in the Division of Applied Research and Educational Support (DARES) seek to create and disseminate knowledge about Positive Behavioral Support (PBS). PBS features functional assessment and subsequent design of proactive, assessment-based, comprehensive supports within natural settings for individuals with problem behavior. Central to the CARD approach and related projects, the effectiveness of PBS is supported by more than 50 studies to date.
Affiliated projects include:
o Family Network on Positive Behavioral Support Project
o Individualized Support Project Outreach for State Service Systems
o Positive Behavioral Support Project: Team Training and Technical Assistance
o Families as Teachers Program
The Department of Child and Family Studies (CFS) is a department of the Louis de la Parte Florida Mental Health Institute, University of South Florida. The faculty and staff of CFS are committed to enhancing the development, mental health and well-being of children and families through leadership in integrating research, theory & practice.
For more information about CARD and its related programs, visit the web site at http://card-usf.fmhi.usf.edu.