AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

ANNUAL ISSUE HEALTHCARE

For children with special health care needs, hospitals become a "second home" to receive the necessary health care that would enhance their abilities to have a healthy, productive life.

Of Hospitals, Children with Disabilities and Everyone Else

BY H. BARRY WALDMAN, DDS, MPH, PHD AND STEVEN P. PERLMAN, DDS, MSCD, DHL (HON)

Hospitals originated in Europe in past centuries to service pilgrims traveling months on the road as they sought the next religious shrine. They have now become centers for providing health care, research and education. Today they are undergoing dramatic advances in technology, interactive programs and economic arrangements. No matter the changes, their prime effort remains to provide care for the evolving populations they serve.

FIRST, THERE ARE REAL YOUNGSTERS

Almost all of us spent the first days of our life in a hospital. We have no memory of the newborn accommodations where we were fed, cleaned up, cuddled and slept most of the time with those tiny little boys and girls who someday might become our mates and friends. If we were lucky and all went well for the next many decades, our visits to hospitals were few and far between. Unfortunately, for some, the stays in hospitals resulted in fre quent returns to secure the necessary treatments as tiny tots advanced in childhood years.

For children with special health care needs, hospitals become a "second home" to receive the necessary health care that would enhance their abilities to have a healthy, productive life.

For most individuals transitioning from childhood to adulthood, hospitals can be a destination for an occasional visit to an emergency room. Football, climbing trees, roller skates, car rides and other activities that cause injuries too often require necessary treatment in a hospital. Unfortunately, for some, the range of hospital services are necessary treatment for secondary and comorbid conditions related to their disability. As we age into advanced years, hospitals become a frequent reality. (These words are written by one of us [HBW] who currently is experiencing his stay for a [hopeful] minor "vacation" at a local hospital.)

During our stays, we learn that hospitals are more than just buildings full of beds, equipment, and a full range of health professionals. A hospital is an institution catering to the full range of life services (ranging from the joys to sorrows). When it comes to children (especially youngsters with disabilities), a hospital is a whirlwind of changing people with strange and scary machines. No matter how much we try with changing colors of walls and pictures, play toys and loving gestures, we cannot reconstruct the security of a familiar loving home environment. As parents and grandparents, we must never underestimate the concerned efforts by dedicated members of a hospital staff (who may not reach the familiarity of a loving family), but nevertheless, make the effort and smooth out the rough edges of the stay-in wards for children (and yes for adults too).

TEENAGERS ARE ANOTHER STORY

They are "certain" they are grown-ups, capable of handling their own needs, especially since they have their iPhone, iPad and laptops. The reality is that they are a mixture of confidence and fear. The input from their parents is denied as unnecessary and old fashioned. But they, too, may require needed hospital care.

Fortunately, the "all caring army" of hospital personnel is a mixture of young and the not so young who relate to this new generation of patients whose life exists on and about the computer. But there are difficulties – "Google is now god" and suggestions for medications and treatment plans are reviewed (with Google) to assure the patient that all treatment recommendations fit into the information from this new god.

AS FOR OLD FOLKS (THE WRITERS' BIAS)

The older generation is increasing in numbers and costs. Hospitals, nursing homes and assisted living facilities are "growth industries." While these businesses are "exploding" in size and expense, older hospital patients are faced with many of the same issues as in previous generations. For example:

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STAY STRONG: As parents, we must never underestimate the concerned efforts by dedicated members of a hospital staff who make the effort and smooth out the rough edges of the stay-in wards for children (and yes for adults too).

BACK TO OUR CHILDREN WITH DISABILITIES

Whether the hospital stay is short or long term, we must never lose sight of the youngsters with disabilities caught in a world of strange and scary things. How you as parents prepare your child for these experiences prior to their hospital stay is critical. Work with the staff. Understand their difficulties. They are dedicated to improving these experiences and together with them you can ease the child's stay in the hospital. Nevertheless, despite the needed hospital care for these youngsters, it is essential, as soon as possible, to return them to their family, school and friends; essentially to limit their isolation and not emphasize their past experiences.

RANKING OF HOSPITALS

We live in an era of instant information with the touch of a computer that searches an infinite number of sources. Unfortunately, the dizzying amounts of data may well be intentionally or unintentionally biased for any number of reasons. In addition, families may have long-term established relationships with physicians who staff local hospitals. Nevertheless, with these considerations in mind, we can search the internet to reassure ourselves that our children are receiving care in some of the more favorable recognized facilities For example, U.S. News annually reports a listing of the best children's hospitals in the country. The most recent review lists Boston Children's Hospital as first; followed by Cincinnati Children's Hospital, Children's Hospital of Philadelphia, Texas Children's Hospital – Houston and Children's National Medical Center, Washington DC.1

AN OVERVIEW

Remember the last time you were admitted to a hospital for an emergency or general service. A long list of questions had to be answered; ranging from your health history, reasons for your current visit and (most important?) payment arrangements. You then (if possible) were assigned to a room to share with a stranger. You undressed and put on a garment that couldn't be secured properly in the back or possibly the front. You made it to the bed and awaited the inevitable series of venous punctures to draw the necessary liquid for laboratory analysis. Meals appeared on trays that were quite different from those at home. Sleep may well have been interrupted by necessary tests and the noise from a stranger in the next bed or from individuals down the hall. But you are an adult, most likely accustomed to these inevitabilities. Now imagine these events through the eyes of your children – especially those with disabilities who frequently are confronted with hospitalizations. Just scary and frightening!

Question: How well are you and your family preparing your child with special needs for these events? Remember to seek out the assistance from those in the hospital setting who have experience in these eventualities! •

ABOUT THE AUTHORS:

H. Barry Waldman, DDS, MPH, PhD is a SUNY Distinguished Teaching Professor, Department of General Dentistry, Stony Brook University, NY. E-mail: h.waldman@stonybrook.edu Steven P. Perlman, DDS, MScD, DHL (Hon) is the Global Clinical Director and founder, Special Olympics, Special Smiles and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine.

References

References 1. U.S. News Announces the 2018-2019 Best Children's Hospitals. Available from: usnews.com/info/blogs/press-room/arti- cles/2018-06-26/us-news-announces-the-2018-2019-best-childrenshospitals Accessed 24, 2019.

AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY

The American Academy of Developmental Medicine and Dentistry (AADMD) was organized in 2002 to provide a forum for healthcare professionals who provide clinical care to people with neurodevelopmental disorders and intellectual disabilities (ND/ID). The mission of the organization is to improve the quality and assure the parity of healthcare for individuals with neurodevelopmental disorders and intellectual disabilities throughout the lifespan.