Down Syndrome and the Health Care Professional

By Sandy Keefe

What's the best way to tell parents about new visual-motor or perceptual issues in their child with Down syndrome? How often should these children be screened for sensory impairments? Do adolescents with Down syndrome continue to gain fine-motor skills? How can you best support this development? Does therapy really make a difference in the daily life of a child with Down syndrome?

Staff at the National Down Syndrome Society have provided health care professionals with answers to these questions and hundreds more every year. Parents and professionals have contacted NDSS to describe the need for succinct information sources and practical tools for therapists, nurses, genetic counselors, physicians and other professionals working with individuals who have Down syndrome.

The Changing Lives Program

Last March NDSS released a self-contained program known as "Changing Lives: Down Syndrome and the Health Care Professional." According to Andrea Lack, associate director of NDSS, the society is in the process of training local affiliates across the country to use the kit for educating health care professionals about the medical and developmental needs of people with Down syndrome.

The main strategy behind the program is to provide in-service training for health care professionals within their own hospital or clinic setting. The program is a proactive, multimedia approach, with the goal of providing health care professionals with information and training before the patient is ever seen.

The Changing Lives program has developed an extensive list of strategies to reach health care professionals, including:

• in-service training within a hospital or clinic setting,

• dissemination of print materials and videos,

• on-site conferences for health care professionals,

• guest lectures and grand rounds by an expert on Down syndrome,

• presentations to graduate students in professional education programs,

• networking and relationship-building within the health care community, and

• marketing and public relations efforts.

Practical Tools and Information

"Changing Lives: Down Syndrome & the Health Care Professional" equips health care professionals with information to help inform parents that their baby has Down syndrome, and to impart other sensitive information to the family. Think of the many times you've struggled to come up with the right words to describe the issues of sensory integration dysfunction, or to communicate the significance of new findings during a therapy session. Wouldn't it be helpful to get some advice from seasoned parents so you can communicate effectively?

Along with succinct summaries of the medical and developmental issues facing individuals with Down syndrome, the kit addresses best-care practices for each age group. In addition, it contains valuable tips to foster satisfying relationships between professionals and parents. Some particularly poignant sections of the videotape for professionals answer tough questions: "What do moms think of their kids with Down syndrome?", "Should assumptions be made?" and "Can people with Down syndrome achieve?"

A Multimedia Approach

NDSS has packaged training information in a variety of media, including print and videotape. "Changing Lives: Down Syndrome & the Health Care Professional" is a 25-minute tape that comes with brochures to reinforce the information in the tape. Local affiliates can access the print information online and customize it by adding local information and contact people.

Therapists working with individuals with Down syndrome will be particularly interested in the portfolio packet for health care professionals, which includes:

• the Complete Down Syndrome Health Care Guidelines with a reference list,

• laminated cards with the health care guidelines,

• a flow chart for tracking medical exams at various developmental stages,

• Down syndrome growth charts,

• Down syndrome head circumference charts,

• a brochure about Down syndrome,

• a brochure about NDSS, and

• a resource list for health professionals.

The educational materials are well-written, up-to-date and person-centered. Affiliates also may choose to use any of the 30-plus online customizable templates and sample letters to share information about the program within the health care community.

Who Needs Another Video?

While many experienced therapists may question the need for more disability-centered education, this videotape for health care professionals approaches the topic from a new perspective. According to NDSS, the video "offers a unique insight into the experiences of parents and families and the enormous impact health care professionals may have on their attitudes and lives. Professionals are challenged to recognize and overcome stereotypes and treat children with Down syndrome and their families with the highest level of care." Featuring actor Chris Burke and Jason Kingsley, an author with Down syndrome, the video also includes commentary from parents and medical professionals dedicated to the care of children with Down syndrome.

To find out more about the Changing Lives program in your community, contact the National Down Syndrome Society at 1-800-221-4602 or info@ndss.org.

Sandy Keefe, RN, MSN, is a nurse case manager for children with severe disabilities. She is also the mother of an 11-year-old with Down syndrome.