Using Research to Guide Decision Making
As family members of someone with a disability, we are often torn when trying to decide what’s best for our kids. Thanks to the internet, there are answers to every problem, but knowing the source of the information can be tricky and it’s hard to determine if the information is provided by an expert or if it’s just a helpful person relaying advice about their personal experiences, which may not match up to your life. Even with two degrees in Special Education, I always walked a tightrope between what I was told was the best decision and what my “gut” told me. I lost sleep and anguished over making the wrong choices, and often well-meaning professionals made things worse for me by implying that I didn’t really know what was best for my child, or that I was letting my emotions cloud my judgment. I felt a combination of hurt, fury, and self-doubt.
Certainly one of the best ways to find out the inside scoop of what’s going on in your geographic area is to talk with other family members. Parent to Parent groups that involve family members are often good resources to receive training, advocacy skills, and emotional support. Sometimes just talking to another parent who “gets it” can provide a much-needed source of empathy and understanding. But for making decisions, each family’s values and needs for their child varies. What may have been a great experience for one family, may not fit for another, and could exacerbate feelings of isolation and loneliness. Some areas have a local-chapter, disability advocacy group such as the Arc or an Autism Society that can provide a network of resources based upon their nationwide access. Publications, such as this one, provide countless resources, tips, and strategies from nationally recognized experts.
Children who are diagnosed with disabilities at an early age typically have a large number of professionals who provide services. My child had two pediatricians, an occupational therapist, a speech therapist, a special educator, teaching assistant, and a home-based tutor. Often, professionals provide input, however most are careful to lay out the options, and leave the decision making to the family members. But, you may feel that the professionals in your life have a bias that concerns you.
Empirical evidence to inform my decisions
For my family, it was important to have empirical evidence to inform my decisions. Research that is peer-reviewed, means that before it’s published, a panel of experts in the field review it, decide if the research is sound, and make recommendations to the authors. Therefore, by the time a research study is published, it has passed through the hands of many knowledgeable experts. And, studies that have been peer reviewed are less likely to promote controversial recommendations about anecdotal solutions whose findings have been exaggerated to promote sales of a particular product or service. It may come as a surprise to learn that, although research has proven certain practices improve outcomes for children, often local schools and service providers are not aware of them or do not have the resources to implement the recommended strategies.
But how does accurate information from research trickle down to families like ours? Your first thought may be to enlist the assistance of an internet search engine, like Google, Safari, or Yahoo. Google has a special search engine called Google Scholar which provides an easy way to search scholarly literature and can be narrowed down to look at only articles that were published about a specific topic, within a certain time period or by a specific author.
Searching for specific things available in your state
For a more specific search of things available in your state, each state and territory has at least one University Center for Excellence in Developmental Disability (UCEDD). The Association of University Centers on Disability (AUCD), the association for UCEDDs, posts links to all UCEDDs on their website. UCEDDs serve as a bridge between the university and the community, bringing together the resources of both to achieve meaningful change. Communication with your state’s UCEDD might be a good starting point to connect you with innovative programming or experts in your area.
Once you have found resources, take your time when reviewing them. Have a pencil on hand to make notes. On the title page of most articles, the main author’s name and contact information is listed, and therefore you may actually go straight to the author to ask a question about their work. As a published author, there is nothing that would give me more pleasure than to know that my work is actually being used by a family who may find it valuable.
At the UCEDD in Virginia where I work, we have conducted many research studies and have published results that may help parents who are making decisions about supports and services for their family members. We have researched how parents make decisions and the factors that are most important to them when charting a path for their family member.
We also do a lot of one-on-one work with families and want to understand if programming like, for example, cultural brokers, helps underserved parents to gain greater access to the information and support that their family needs. We have done a series of research studies on the outcomes of state-based services to better understand which services led to the best outcomes for people with disabilities.
We also frequently test interventions that help people to live the life they want as part of their community in areas such as abuse prevention and health literacy.
In the next few issues of Parenting Special Needs Magazine we will focus on research that may be helpful to families.
About the authors: Molly Dellinger-Wray, MS Ed. and Parthy Dinora Ph.D are part of The Partnership for People with Disabilities at Virginia Commonwealth University, a university center for excellence in developmental disabilities. They are both moms of terrific boys who benefitted from special education services.