Navigating Life with ASD Subcommittee
SERVICE NAVIGATORS. Family members and autistic adults need effective support to navigate the range of services and supports scattered across the health care, education, and social service systems. This subcommittee will focus on the best options to ensure comprehensive and coordinated navigation services throughout the lifespan.
Why This Is Needed. Facing the broad landscape of services and supports can be overwhelming for families of newly identified autistic children and for autistic adults who are newly identified or assuming responsibility for their own needs. Understanding their main options, deciding which are the most suitable for them, making specific choices among service providers, and taking all of the steps needed to ensure that the services and supports can actually be accessed are barriers for almost everyone. This contributes to significant stress and delays in accessing care, and can leave people without the objective information they need to make the best choices. Because autism is a lifetime condition and needs change over time, access to service navigators must be available throughout the lifespan. Unlike cancer care, in which care navigators are routinely provided and funded, there is no uniformity as to whether such services are available, their scope, their quality, or their funding.
PLANNING FOR THE LIFESPAN. The focus of this project is to ensure that there are easily understood materials available for families, autistic adults, and service providers to help them plan for lifetime needs. There are two aspects to such planning. First, families raising an autistic child should expect independence and begin teaching the skills the child will need (for example, self-care, cooking, laundry, cleaning, and shopping) as early as possible. Second, families, autistic adults, and service providers need to understand the range of service and support options, how these change through the lifespan, funding options, and the processes and eligibility requirements for obtaining them.
Why This Is Needed. Families of autistic children are often focused on immediate, day-to-day needs. They often overlook opportunities to start teaching independence skills, especially if they cannot imagine in early or middle childhood that their child will ever live independently like a non-autistic adult. In order for families and autistic adults to take charge of their services and supports, reduce lifetime dependence, and avoid the catastrophic results that can occur when an aging family member dies without having provided for an autistic adult child, all concerned need continuous access to easily understood materials to plan for coming life stages.
Suggested members: Professionals who provide service navigation information to families in health care, education, DD services, brokerages, or other organizations; family members; adults.