An adequate workforce in human services is an issue for most persons with disabilities in Kentucky. However, the problem is magnified for children with ASD and their families since many of the behaviors common to children and youth with ASD are very unique. The behaviors are often compounded by the limited verbal or other communication deficits of the children as well as their
unique sensory and behavioral characteristics. Due to these limitations, those within the workforce must not only be willing to work with those who have disabilities and unusual behaviors but must also have specialized training to enable them to communicate with the child or youth.
Limited service array
The current service array for children and youth with ASD in inadequate. Research indicates that there are a variety of therapies that are helpful for this population of children. However, due to many factors such as training, the inadequate workforce, and the lack of a payor source, many of the services are simply not available. The Consortium noted that many of the services listed as available for this population are the traditional services provided for children with mental health disabilities such as outpatient therapy that are not conducive to children who are non-verbal.
Mandated model for service delivery
Many providers in Kentucky are aware of and are encouraged to utilize person centered planning and the wrap around model of support for children and youth with disabilities. However, the actualization of the model is proving to be very difficult. The Consortium states that many providers fall back to the traditional medical approach that denies parents and consumers the freedom to design an individualized program that is appropriate for the unique needs of the child and family. The providers point to arbitrary decisions and lack of understanding of payor sources for approval of individualized services. Many of the difficulties seen in the service delivery system may stem from not having a clear understanding of autism and the individualized issues seen in families.
Quality and monitoring
The current system of care, which includes medical, psychological and educational services for children with ASD has oversight in fiscal management but very limited oversight in actual clinical and functional outcomes, provider qualifications and individual outcomes for children. This lack of oversight and accountability perpetuates a cycle of poor services and even poorer outcomes without regard to cost.
One consistent theme within the Consortium concerns the role of the Kentucky Department of Education in providing services for children with ASD. While some school districts are providing effective services within the limits of qualified providers, many are not. There is great concern among Consortium members that any program developed by Medicaid should enhance and not replace the LEAs in providing for the educational needs of these