Taking charge when change is needed: The chronology of the 2006-2008 Philadelphia Autism Spectrum Disorders (ASD) First Steps Project

Public health nurses, working with underserved, inner city, at risk populations, face unique clinical challenges. These include updating of clinical knowledge and skills; acquiring needed resources; recognizing and addressing unmet needs of target groups. The challenges are further compounded by 1) 2002 published findings that white children in Philadelphia are diagnosed with autism at 6.3 years compared 7.9 years for black children; 2) primary care and public health clinicians have had little to no formal education in ASD early detection screenings and treatment of autism; 3) the wait list to be seen by a development specialist for diagnosis is more than one year yet families in crises need help now; 5) the urgent need to recognize development delays as young as 12 months, screen and refer for early intervention services. The First Steps Project is a public health nurse and social work model addressing individual, family, provider and community needs regarding the diagnosis and care management of autistic child(ren). The project emerged from recognized unmet needs of low income, predominately minority families served by the Philadelphia Nurse-Family Partnership Program and inner city nurse managed health centers. The paper outlines the chronology of the project from idea to funded initiative. A licensed social worker, public health nurses, mental health counselor, data manager, nurse volunteer, and educational consultants are First Steps staff. The project emphasizes earlier ASD diagnosis and intervention with the intent of helping at risk families plan for their children's developmental and educational futures. Activities include in home services, community education, liaison activities with regional autism centers, educational seminars with nurse practitioners, mental health therapists, social workers etc, resource guide development as well as building a cadre of committed professionals with the skills to work with the escalating number of diagnosed children (1:150). A clinical case summarizes family/child short term outcomes and highlights lessons learned. The project continues to expose the dearth of needed family and community supports and the necessity to further educate students and providers about ASD. Advocacy and public policy work is discussed