AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

"We hold these truths to be self-evident…" Children with disabilities can become healthy and successful adults

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

All too often, we tend to live in the past, reflecting on experiences that were the norm in our earlier years. As we age (we the authors are in our mid 70s and 80s), the good ole days take on a glow of nostalgia (a sentimental longing or wistful affection for the past, typically for a period or place with happy personal associations1). We are inclined to overlook the difficulties and hardships that existed in the long past supposed halcyon years. For example, developments in one area had dramatic impact on the way our ancestors lived.

"… the steam engine had been attached to milling machines and had been used to dramatically lower the cost of luxury cloth previously available only to the rich. That cloth was cotton. Until then, the clothes of the poor had been made of wool. Wool shirts and pants could not be laundered. They smelled deplorable. And they housed parasites (and) insects…" 2 "…two chemists in France used a science still in its birth … to develop techniques for mass producing the raw ingredients for another miracle product – a product that had previously been made by hand – soap. And soap took the health benefits of laundering to the next level." 2

AND IN OUR LIFETIME

In 1967, "…there were more than a quarter of a million individuals (in the US) with mental retardation/developmental disabilities (MR/DD) in state institutions… (and) in psychiatric institutions… (By) 1997, the number of institutionalized residents with MR/DD decreased by 75 percent and 91 percent in psychiatric institutions. For more than three decades, changing social policies, favorable legislation for people with disabilities, and class-action legal decisions … (have modified our understudying of the abilities of individuals with special health care needs)." 3,4

In 1988, "…the true measure of a society lies in the way it treats its older, handicapped, and disadvantaged citizens. If this is true, the U.S. society still has a way to go." 5

In 1990, "The (Americans with Disability Act) ADA is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public. The purpose of the law is to make sure that people with disabilities have the same rights and opportunities as everyone else. The ADA gives civil rights protections to individuals with disabilities similar to those provided to individuals on the basis of race, color, sex, national origin, age, and religion. It guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, state and local government services, and telecommunications." 6

In 1999, "… the United States Supreme Court held in Olmstead v. L.C. that unjustified segregation of persons with disabilities constitutes discrimination in violation of title II of the Americans with Disabilities Act. The Court held that public entities must provide community-based services to persons with disabilities when (1) such services are appropriate; (2) the affected persons do not oppose community-based treatment; and (3) community-based services can be reasonably accommodated, taking into account the resources available to the public entity and the needs of others who are receiving disability services from the entity." 7 

In 2011, Children with disabilities grow up:

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FOR BETTER OR WORSE: For many, marriage is the keystone for joy and happiness. In 2014, the overall first-marriage rate for people ages 18-49 years was 71.8 per 1,000 persons; For people with disabilities it was much lower than for the general population, 41.1 per 1,000 persons.

YOUNG ADULTS WITH SEVERE DISABILITIES

Having held a paid, community-based job while still in high school is strongly correlated with post school employment success. In addition, being a male and having more independence in self-care, higher social skills, more household responsibilities during adolescence and higher parent expectations related to future work are associated with increased odds of employment after school for young adults with severe disabilities.9

MARRIAGE

Is the legal or formal recognized union of two people as partners in a personal relationship. For many, marriage is the keystone for joy and happiness.

In 2014, The overall first-marriage rate for people ages 18-49 years was 71.8 per 1,000 persons. For people with disabilities it was 41.1 per 1,000 persons; much lower than for the general population. However, there are very wide variations in the rates of individuals with disabilities that marry.

In 2012, Should couples with special health care needs have children? "Despite obvious difficulties placed upon children in a family with a disabled parent, I do not believe a couple in this situation should refrain from having children. There are many pros and cons in bringing up a family under these circumstances. Unfortunately I could never join my daughter on school trips, participate in any sports day or events of a physical nature; these were left for my husband to attend. However, being at home I was able to spend hours of quality time every day with my child which most working mothers aren't afforded the opportunity. All those hours we spent together were precious and created a lasting bond between us. If I weigh up the good and the bad, I believe that for me the positive things have far outweighed the negative. If I'd known what lay in store, would I still have had a child? My answer is unequivocally "Yes." I wouldn't have missed out on having my daughter for the world." 11

ON THE OTHER HAND

"The children are endangered when, for example, the parents do not know how to hold or bathe the child safely, make the home environment safe, provide emergency first aid, or when to take the child for medical treatment…" 12

"I'm not promoting forced sterilization for the mentally challenged, but shouldn't the rights of an innocent, vulnerable baby be taken into consideration, too? Shouldn't the emotional growth and safety of an inquisitive toddler be encouraged and protected? And as the child ages, doesn't he/she have the right not to be environmentally handicapped because his/her mentally challenged parents wanted a baby?" 12

"A young couple with Down syndrome says they are ready for babies and marriage, despite the pleas from their concerned parents, who doubt their children are emotionally and physically ready." 13 "The parents of 8-month-old Hunter and 4-year-old Christopher have lost custody of their children — not because they have harmed them, endangered them or neglected them... Rather, they have been told they are not smart enough to raise their boys and have fallen down a rabbit hole of trying to prove to child welfare authorities they are worthy parents, according to advocates and experts.14 And your thoughts are…

In 1999, "Having a disability shapes a person's life, but it not their total destiny." – Senator Robert Dole 15 •

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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.

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