AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

What Are We Learning?

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

WHAT WILL HAVE BEEN LEARNED ABOUT INDIVIDUALS WITH SPECIAL NEEDS IN A WORLD OF COVID-19?

"The COVID-19 crisis (has) a potentially far-reaching, longterm negative impact on children around the world. More than 1.5 billion students (are) out of school. Widespread job and income loss and economic insecurity among families (are) likely to increase rates of child labor, sexual exploitation, teenage pregnancy, and child marriage. More than 91 percent of the world's students (are) out of school, due to school closures in at least 188 countries. Experts estimate that the global total of COVID-19 deaths could eventually (reach) 10 to 40 million, which inevitably (will leave) many children without one or both parents or other caregivers."1

"While social distancing (has) been widely promoted as the best strategy to avoid transmission, that advice may not (be) realistic for people who care for children and youth with disabilities who may require therapy or assistance with daily tasks. Meanwhile, children's clinical services and other treatments (are) being disrupted with the closures of schools, medical settings and caregiving agencies. Families' ability to obtain critical medical supplies (are) difficult as resources (are) scarce."2

In addition, while children overall seem to be less likely to show symptoms of COVID-19, those with disabilities may fall into the category of 'high risk' due to secondary health conditions; further adding to caregiver stress related to fears of infection and contagion. Should a child with a disability become sick or need medical care during the pandemic, many parents worry about rationing of care and supplies as another threat to their child's safety. 3

As the COVID-19 pandemic unfolds, the virus sickens and kills people of all ages, races, income levels and levels of underlying health. Public health officials continue to stress that seemingly young and healthy people are vulnerable to the virus while acknowledging that it is especially deadly for older people, people with chronic illnesses and people with disabilities. 4 For example: 1. People with Down syndrome who have certain underlying conditions may be at risk for a more serious course of COVID-19, which can cause symptoms such as: loss of taste and smell, shortness of breath, fever, cough and digestive issues. Higher risk underlying conditions include:

2. Parents of children with disabilities are worried that federal officials would give districts claiming coronavirus hardships significant leeway to sidestep laws that ensure their children have access to education that's appropriate for their needs. 6

3. In the time of the coronavirus pandemic, parents across the country are learning to cope with remote schooling. For parents of children with special needs, the challenges can be impossible. 7

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.

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NO ONE SPARED: Public health officials continue to stress that seemingly young and healthy people are vulnerable to the virus while acknowledging that it is especially deadly for older people, people with chronic illnesses and people with disabilities. Numerous guidelines have been put forward for public health planners, but they have not specified steps to include people with disabilities in their planning.

4. A third of the global population is on COVID-19 lockdown, and school closures are impacting more than 1.5 billion children. Movement restrictions, loss of income, isolation, overcrowding and high levels of stress and anxiety are increasing the likelihood that children experience physical, psychological and sexual abuse at home – particularly those children already living in violent or dysfunctional family situations. While online communities have become central to maintain many children's learning, support and play, it also increases their exposure to cyberbullying, risky online behavior and sexual exploitation.

The situation is aggravated by children and adolescent's lack of access to school friends, teachers, social workers, the safe space, services and reports of abuse that schools provide. The most vulnerable children – including refugees, migrants, and children who are internally displaced, deprived of liberty, living without parental care, living on the street and in urban slums, with disabilities, and living in conflict-affected areas – are a particular concern. For many, growing economic vulnerability increase the threat of child labor, child marriage and child trafficking. 8

SO, WHAT ARE WE LEARNING?

"Beyond the threat presented to the general population, pandemic influenza poses a substantial risk to people with a disability because of (1) a lack of epidemiological data on which to base preparedness plans and evaluate responses; (2) a lack of detailed emergency preparedness plans at all governmental levels with regard to people with disabilities; (3) disability-related factors that increase risk for exposure, complications, and death from pandemic influenza; (4) inaccessibility of risk communication; and (5) ethical issues surrounding priority vaccination and treatments that affect the disability community. 9

There are little if any population-based data on the experiences of people with disabilities during emergency situations. In addition, there are sparse data on the impact of seasonal influenza and no data on the impact of previous influenza pandemics on this population. Further, while there is extensive demographic and geographic (e.g. nationally, region, state and county) information available for the 424,653 children in foster care in 2018, there are no population-based data available regarding the number of individuals with disabilities. 10

Without the capacity to identify people with disabilities in emergency management surveillance systems, these populations may be overlooked when interventions are planned and evaluated. However, in the past, a somewhat higher percentage of people with disabilities (36.5%) reported getting annual immunizations for seasonal influenza than did people without disabilities (32.2%). 9

Federal agencies have conducted a review of emergency plans across the nation and found major fragmentation, inconsistencies, and critical gaps regarding populations with disabilities. Few plans or guidelines provide details about how emergency planners can meet the needs of people with disabilities before, during, and after an emergency. Current plans tend to delegate critical responsibilities regarding disability to third parties or make scattered references to people with disabilities.

The risks are greatest among:

• Persons with severe disabilities who may rely routinely on assistance from others to perform basic activities of daily living. Many of these individuals reside in institutional settings such as nursing homes or receive support services in their homes. Such persons would face substantial difficulties when these support services would be disrupted during an influenza pandemic. (Note: According to the 2000 US Census, nearly 29% of American families include at least one person with a disability.)

• Residents of group homes operated by state and nongovernmental agencies. 9 The reality is that numerous recommendations and guidelines have been put forward for emergency and public health planners, but they have not specified steps to include people with disabilities in their planning. Such action is needed, particularly at the local level.

Recommendations are available to strengthen pandemic influenza planning and response that will reduce the risks posed to populations with disabilities. They include:

• Indicators of disability status are needed in all public health surveillance systems to assess the impact of public health threats and events on populations with disabilities so that effectiveness of planning and response can be assessed.

• People with disabilities, their advocates, and service providers such as home health care agencies, should be included in planning for pandemic influenza to inform emergency planners of the need for and resources to ensure adequate provisions for effective risk communication.

• Questions that identify people with disabilities should be included routinely in all data collection related to pandemic influenza and preparedness activities.

• Specific contingency plans need to be developed to ensure continued staffing for in-home and personal assistance services and congregate care supervision and care.

• National pandemic influenza program managers need to continue to evaluate and provide detailed feedback to state, territorial, local, and tribal emergency planners on performance with regard to their preparations for all at-risk populations.

"Public health planning for pandemic influenza needs to include the involvement of people with disabilities to ensure that plans adequately anticipate and address these needs to minimize preventable exposure, communicate risks effectively, and ensure continuity of essential services." 9

REMEMBER

WE STAND WITH YOU!

The American Academy of Developmental Medicine and Dentistry (AADMD) is a leading organization for the advocacy of people with intellectual and developmental disabilities; as well as for the education and training of their health care professionals. In the current Covid-19 crisis, two major issues have surfaced that demand immediate action to protect the health and safety of this medically underserved and marginalized population – equal access to ventilators and the ability to have a caretaker accompany them to emergency rooms. The following two policy statements will be of value for our readership, family members, advocates and health care providers in their efforts to secure needed assistance for the children and adults with special health care needs. For details on this, visit EP's May issue: reader.mediawiremobile.com/epmagazine/issues/206098/viewer?page=19 •

ABOUT THE AUTHORS:

H. Barry Waldman, DDS, MPH, PhD is a SUNY Distinguished Teaching Professor, Department of General Dentistry, Stony Brook University, NY. Email: 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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