We often hear the terms “best practice” and “evidence-based practice” used in relation to programs or policies – but what does that mean? How do we know if a practice is promising or evidence-based? A recent article, published in Intellectual and Developmental Disabilities, offered perspectives on strategies to gather and evaluate evidence as well as guidelines to establish evidence-based practice. Through a collaboration with AAIDD, The Arc partnered with the lead author, Dr. Robert Schalock, to develop a brief to educate individuals, families, and practitioners on these concepts in hopes of bridging the gap between research and practice.
Families which include members with intellectual and developmental disabilities (I/DD) have a variety of needs from obtaining healthcare to navigating social service systems to emotional support. And, these needs can be substantially different from the needs of families who do not have a member with I/DD. That is why organizations such as The Arc exist: to help families meet those unique needs.
Now, an international team of researchers is working to identify and prioritize these needs and compile the data into a report that will help organizations such as The Arc, early intervention programs, family-related and human service organizations better understand what needs are the most critical to families and seek funding to provide for those needs.
Can you help? If you are the parent of a child with I/DD from birth to age 21, you can take this online survey, called the Family Needs Assessment (FNA) and help us understand exactly what your family needs to thrive.
But the FNA survey is not just about collecting research. In addition to providing crucial information, the survey is designed in such a format that families can use it in their planning processes for obtaining specific family support. And it will provide immediate links to the best online resources for each type of need identified.
The survey consists of 75 “needs statements” that relate to 11 areas of family life including health, daily care, social relationships, family interaction, spirituality and economics among others. Each individual taking the survey will rate the extent to which specific “needs statements” represent a need for their family on a 5-point scale. If you would like to take the survey, it should only take 15-20 minutes to complete. Find out more and start the survey at the at the Beach Center on disability at the University of Kansas website.