AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

Children and Adolescents with Disabilities: in Institutions or Nursing Homes?

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

"Many people may think that asylums are a thing of the past, but … people with a learning disability and/or autism continue to be locked away in inpatient units across the country, where they are at increased risk of abuse and neglect… These hospitals are not homes. What is urgently needed is an emergency injection of investment into social care to ensure the right special support and housing in communities." 1

"Hundreds of children are currently segregated in nursing facilities throughout Florida. They are growing up apart from their families in hospital-life settings… they live segregated lives – having few opportunities to interact with children and young adults without disabilities or to experience many of the social, educational and recreational activities that are critical to child development." (sic) 2

In 1990, the Americans with Disabilities Act (ADA), was passed into law. The ADA, among many other things, states that children born with disabilities or other medical conditions must be allowed to receive care and treatment in a community setting whenever possible. Not in 'warehouse-like" environments as formerly was done to children in previous generations; and is still a very common practice in other countries.

"There are millions of infants, children and adolescents locked away and forgotten about in institutions all over the world. But the UN Convention on the Rights of Persons with  Disabilities – ratified by 174 countries … have made it clear this can't continue… Large and small group homes are especially dangerous for children, for whom there is no substitute for the need to grow up with a family." 3

In the U.S. there are about 6,000 children under the age of 21 who are living in American nursing homes. In addition, people who are age 31 to 64 years, are the fastest-growing group in nursing homes. Actually, it is the same problem. All too often, when people have disabilities, there aren't a lot of alternatives for them to get the care they need to live at home. 4

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.

WORLDWIDE

Estimates of the number of children living in nursing homes and larger institutions range from two to eight million. These figures often are reported as underestimated, due to lack of available data from many countries and the large percentage of unregistered institutions. Most of the children who are placed in institutions have disabilities. Many are held in abusive conditions, separated from their families and their communities, deprived of education and neglected. For example, "A disproportionate number of children are placed in institutions in India, Japan, Serbia and Russia… In Russia, too often children with disabilities are placed in institutions shortly after birth, where they may be tied to beds, denied health care and adequate nutrition… The Human Rights Organization has found similar abusive practices against children and adults with disabilities in Croatia, Ghana, Greece, India, Indonesia and Japan. " 5

International studies have found that both private and government-run residential institutions for children, or places such as orphanages and psychiatric wards, cannot replicate the emotional companionship and attention found in family environments that are prerequisites to healthy cognitive development. There are millions of children who live worldwide in these facilities, even though an estimated 80 to 90 percent of them have at least one living parent. The physical and psychological effects of staying in residential institutions, combined with societal isolation and often subpar regulatory oversight by governments, place these children in situations of heightened vulnerability to human trafficking. 6

JUST ONE STORY

Background:

Background: "Frustrated with limited resources, some parents of disabled children feel forced to put their children in care because they can't support them safely at home. This typically means putting children in nursing homes, skilled nursing facilities, or large institutions—not small group homes that root disabled people in their own communities. Such placements occur despite decades of disability activism advocating for community-based living, including legal pressure to establish clear guidelines encouraging government agencies to fund that kind of care." 7

Matthew was a young man whose mother wasn't able to transfer him into and from his wheelchair. When he turned 21, she thought she had no choice but to place him in a geriatric nursing home. He was the only young person in this place. At that time, the state didn't provide the kind of in-home care he needed. His mother was on her own. He just hated being in that nursing home. His whole world stopped.

But then the state received some funding under a new federal program, called Money Follows the Person, that provides basically what it takes to get somebody out of a nursing home. Fortunately, in Matthew's case, it got him out of the nursing home by providing him with nine hours of aides a day to come into his mother's house and care for him. It also provided necessary things that enabled him to live at home. The program paid to put a driveway in front of his house so that he could get into the van. Just simple things like that made all the difference to allow him be independent. All that sounds really expensive until you compare it to the cost of a nursing home. 4

Essentially, children exposed to institutional care often suffer from "structural neglect" which may include minimum physical resources, unfavorable and unstable staffing patterns, and social-emotionally inadequate caregiver-child interactions. Delays in the important areas of physical, hormonal, cognitive, and emotional development are realities. Children exposed to institutional care are unable to receive the type of nurturing and stimulating environment needed for normal growth and healthy psychological development. 8

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NO PLACE LIKE HOME: The emotional companionship and attention found in family environments that are prerequisites to healthy cognitive development cannot be replicated in private and government-run residential institutions or places such as orphanages and psychiatric wards.

RESIDENTIAL CARE FACILITIES

Another reality: A more encompassing view of the difficulties in providing long-term residential care for the young and not so young with disabilities is that, the number of people in the United States who need long-term care is expected to increase to 27 million in 2050. Assisted living and residential care will continue to be important and a growing segment of the long-term care industry. 9

A national study of residential care facilities (RCFs) totaled 31,100, with 971,900 beds nationwide. About one-half of RCFs were small facilities with 4-10 beds. The remainder was comprised of medium facilities with 11–25 beds (16%), large facilities with 26–100 beds (28%), and extra-large facilities with more than 100 beds (7%). One-tenth of all RCF residents lived in small RCFs and about the same percentage (9%) lived in medium facilities, while the majority resided in large (52%) or extra-large (29%) RCFs. 10 Monitoring and ensuring that essential care (in particular, the care of the needs for individuals with disabilities) will be an increasingly difficult task.

SPECIFICALLY

In a recent study regarding those individuals with intellectual disabilities and autism (who live in group homes), the researcher reported that, "they are four times more likely to contract the coronavirus and almost twice as likely to die as compared to the general population." 11 (emphasis added)

THE SUPREME COURT RULING

"Olmstead, or Olmstead v. LC, is the name of the most important civil rights decision for people with disabilities in our country's history. This 1999 United States Supreme Court decision was based on the Americans with Disabilities Act. The Supreme Court held that people with disabilities have a qualified right to receive statefunded supports and services in the community rather than institutions (emphasis added) when the following three-part test is met:

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. Rick Rader, MD, DHL (Hon) is the Director of the Morton J. Kent Habilitation Center, Orange Groove, Chattanooga, TN; Senior VP Public Policy, American Academy of Developmental Medicine and Dentistry; Adjunct Professor, Human Development, University of Tennessee-Chattanooga. He is Exceptional Parent Magazine's Editor in Chief. 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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