Learning More about the Center for Autism and Related Disabilities

I have had many families ask about having an article about how to go about accessing UCF-CARD services for their child/children with Autism. I spoke with Dr. Daly with UCF CARD and asked her to write us an article listing the step by step guide to accessing their services for home and school. Here is Dr. Daly's Article:

Learning More about the Center for Autism and Related Disabilities

Many families of children with autism and related disabilities are referred by their doctors or teachers to register with the Center for Autism and Related Disabilities (CARD). Often, the professional making the referral will not understand or explain what CARD is, or what should be expected, or even how to go about accessing CARD services. Why should families register with CARD and what will happen when they do? First, families should register with CARD so that the State of Florida understands the numbers of individuals affected by autism spectrum disorders (ASD)—CARD is responsible for providing the statewide census of ASD. How services and supports are funded for ASD depends on the legislature having accurate numbers. But more importantly, a family should register with CARD to be able to take advantage of the many complimentary services it provides.

What exactly is CARD and what is it supposed to do? Although we are called a “Center,” we are not the type of place you bring your child for treatment. The Florida Centers for Autism and Related Disabilities are a network of state-funded secondary support programs located at universities around the state. Secondary support means that we don’t work directly with the person on the spectrum, providing therapy or treatment. Instead, we work with the families, schools, agencies and community groups that are part of the everyday life of the person with Autism Spectrum Disorders (ASD). We provide consultation, advice, and resources/referrals to these people who will be interacting with the person with ASD on a daily basis. We do this through technology, and school, home, and community visits, as well as parent education seminars and support groups. Our visits to observe, meet or work with the person on the spectrum are for the purpose of providing recommendations about how to deal with a particular challenge, for demonstration of strategies that are research-proven in helping people with ASD, and to gather information that will assist those who live and work with the individual to better achieve their goals. In addition to these activities, UCF CARD provides more than 100 community based training programs each year for schools, churches, law enforcement and other groups that need additional information and strategies to work with people with ASD. We also provide free screenings for ASD, and an active library on ASD issues. The mission of CARD is to optimize the lives of people with autism and related disabilities.

After a family registers with CARD, which can be done online at www.ucf-card.org or by calling 407 823 6011, they will receive an information packet electronically. CARD must have a diagnostic report documenting an eligible condition (these are defined in the statute that created CARD) in order for services to proceed. (Families in need of diagnosis or awaiting diagnosis may also register with CARD if their child is under 10, and will be granted a pending status for three months, so that they may start taking advantage of services while they await their appointment.) After this information is received, families will receive a call or email identifying their regionally-based CARD coordinator, and will be offered a phone or office-based consultation to discuss their needs. After that, an action plan or follow up email will be provided that outlines the steps recommended, and assigns responsibility for who will complete each step. CARD may recommend the family or individual complete certain steps, such as attending a parent education seminar on the topic of their need, before conducting a community, school, or home-based visit. This is done to insure that face-to-face time with the child or adult is most productively spent problem-solving and working together, rather than merely providing information or basic training.

UCF CARD serves over 6500 families, and each coordinators serve over 1000 families each, so we rely on families and adults with ASD to let us know when issues arise and what they need. After an initial action plan or follow up email is created, we rely on the families to let us know how it worked and if there are additional items that they need to address. This may occur in a short period of time, or not for several years until a new challenge comes up. It is also important for families to keep their email addresses and phone numbers current with CARD, as we do not have the ability to help people if we have no way of contacting them. Coordinators can be contacted via email, voicemail, or calling the office directly. Families should call the center directly if they are not hearing back from their coordinator, as that person may no longer be working at CARD due to budget cuts, or may be away from the center for weeks at a time working with individuals in their area.

CARD does have some limitations on what it can provide for families. We cannot register families who do not have a member with one of the statute-mandated ASD conditions. However, families of any child with a disability can take part in our educational seminars by simply registering to be on our electronic newsletter list or by going on our website and choosing the seminar they wish to attend. We cannot provide crisis support, educational or legal advocacy, or duplicate the purpose of other state agencies. We cannot work with people supporting or living with adults with ASD unless they have obtained guardianship or a consent from that adult. We also cannot go into any school, agency or other program without an invitation from the administrator of that program. If parents would like for their child to be observed at school, or their child’s teacher to be provided help from CARD, they should contact the principal and make that request. Our outcomes will always be best when the school has welcomed us to assist.

Because CARD is funded by the state, supports are offered to families and individuals at no charge. However, that does not mean that the services are without value or cost. We rely on families to be responsible for keeping appointments, returning communications, and involvement in the action plan or follow up recommendations. We must be efficient in allocation of staff time and travel in order to serve the many families registered with us. We partner closely with PALS (Providing Autism Links and Supports, www.pals-ucfcard.org) to offer additional family-oriented supports, such as summer camps and intervention programs, picnics and outings and social groups. PALS also assists CARD with its fundraising mandate.

For more information on CARD, or on Autism Spectrum Disorders, please go to www.ucf-card.org.