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Why the Family Perspective Experience?

There are three main areas that can have an impact on health care providers’ approach to people with disabilities: lack of knowledge, discomfort with working with people with disabilities, and attitudes and misperceptions about disability (Lam, Gunukula, McGuigan, Isaiah, Symons, & Akl, 2010). The Family Perspective Experience Program, a partnership between the Maryland Center for Developmental Disabilities (MCDD) at Kennedy Krieger Institute and Maggie’s Light Foundation, Inc., provides interactions and experiences with children and youth with developmental disabilities to help those working with individuals with disabilities do so more effectively. The literature base is replete with articles confirming that negative attitudes and misconceptions about individuals with disabilities may result in health disparities (Jackson, 2007; Lam et al., 2010; Martin, Rowell, Reid, Marks, & Reddhough, 2005; Paris, 1993). The following personal reflection complements the literature findings that direct interactions and experiences with persons with disabilities and their families can improve understanding and openness to working with persons with developmental disabilities. 

A More Personal Reflection of the Family Perspective Experience

Renee Nelson, Undergraduate Intern, Towson University

The inclusion of the Family Perspective Experience within the MCDD internship experience is a brilliant concept. Direct exposure and interaction with families caring for children with special health care needs is a unique and interesting strategy to help students gain a better understanding of the complexities and challenges these families encounter on a daily basis. Without a doubt, I now have a better understanding of the daily struggles many of these families face, and my admiration for them is greater now than before my involvement with the Family Perspective Experience. Through my experience I was able to see firsthand the struggles many families face, witness the inclusion of a child with special needs in extracurricular activities, and appreciate the complexities of attending frequent medical appointments with multiple providers. And most importantly, I gained a better understanding of how I can best support families and children with special health care needs in the future.

Following the Family Perspective Experience orientation, I was very nervous. I was relatively new to this population and did not know what to expect. Once I contacted the mother of the family I was assigned to, I was fairly at ease. The questions I had prepared were very personal, and I was not sure how to approach the situation. The mother was encouraging and receptive to answering the questions. The conversation I had with her was eye-opening. I immediately understood the complexities and challenges the family had experienced with the government thus far concerning policies, legislation, and regulations regarding quality of care for children and youth with special health care needs. However, this mother did not feel defeated. Instead, she realized that she had to be her child’s best and number one advocate. I learned a great deal from this meeting. 

I met not only this mother, but her children as well. They were very loveable and well-mannered; I was “Miss Renee” to them. From the interaction between the two siblings, it was evident that they cared about each other. While watching them, I suddenly saw the child beyond his disabilities. I also had the opportunity to accompany this family to an adaptive playground and baseball game. It was a delight to see the child participate and be included in activities with children without special needs. He really enjoyed these two events, and I appreciated the chance to share the experience.

I also accompanied this family on medical visits. We went to the pediatrician, speech pathologist, and physical therapist. Each medical visit was unique. The mother had a binder filled with everything that concerned the child medically, and she was very pleased that the pediatrician understood everything in the binder. The pediatrician directed her questions toward the child, which I thought was incredible, and she was very helpful in accommodating the child to use some of the equipment that was not designed for children with special health care needs. It was a great experience to see how the service providers worked with this family.

Overall, my time spent with the Family Perspective Experience has altered my professional trajectory and helped me to discover my future career. I plan to further my education as a nurse, and I would love to work with children with special health care needs at some point in my career. From this experience, I now have a better understanding of the challenges and complexities one family out of many encounters on a daily basis.