Time to Count 'Invisible' Patients, Experts Say

Batya Swift Yasgur, MA, LSW

October 16, 2019

Individuals with intellectual and developmental disabilities (IDD) are not included in national health surveillance systems, a new report commissioned by the Administration on Intellectual and Developmental disabilities (AIDD) suggests.

"Inadequate health surveillance of people with intellectual and developmental disabilities hampers our understanding of their health status, health determinants, and health needs," lead author Susan Havercamp, PhD, associate professor in the Department of Psychiatry and Behavioral Health at Ohio State University College of Medicine, Columbus, said in a press release.

"We call on policy makers to promote greater consistency in defining developmental disabilities and we call on researchers to develop standardized methods for identifying adults with IDD in existing datasets," she told Medscape Medical News.

The report is published in the October issue of Intellectual and Developmental Disabilities.

Havercamp is also guest editor of the issue, which is devoted to an overview of health surveillance research for people with IDD, including the findings of two national collaborative workgroups hosted by the Administration for Community Living.

Long Wait

The "best data" regarding ID and DD were collected in the 1990s, the investigators note.

"Twenty-four years is far too long to wait for updated prevalence estimates for this growing segment of the population," they write.

Instead, they recommend "periodic reviews of the instruments and survey items used to monitor prevalence rates" to ensure the rates stay relevant as the US population evolves.

"Timely and reliable data is essential to identify health needs, understand the causes and correlates of health disparities, and to monitor progress in reducing them," Havercamp said.

The Affordable Care Act of 2010 mandated the establishment of minimum data collection standards for an array of demographic factors, including race, ethnicity, sex, and primary language, as well for disability status.

The minimum data standard on disability status was based on a 6-item question set assessing functional limitations in hearing, vision, cognition, mobility, self-care, and performing errands alone.

"Unfortunately, these questions do not allow for identification of people with IDD within the disability group," the report authors note.

For example, limitations in cognition can be attributable to many conditions, including neurocognitive disorders, neurodevelopmental disorders, psychiatric disorders, and health conditions requiring medications that affect cognition.

Additionally, two national surveillance systems — the National Health Interview Survey (NHIS) and the Survey on Income and Participation — recently eliminated questions previously used to identify adults with IDD.

"Invisible" Population

Other factors limiting accurate health surveillance of patients with IDD include varying definitions of "disability" and inaccurate assessments based on race, ethnicity, and geography, such as residents of US territories, who are often left out of national surveillance systems.

"Without specific questions that allow for ready identification of respondents with IDD, this population becomes invisible in the data," Havercamp noted.

For this reason, the AIDD "initiated discussions with federal partners in the Department of Health and Human Services (HHS) to explore solutions to this data conundrum," she said.

The workgroups consisted not only of members of several HHS agencies, but also university researchers and advocates seeking to improve national surveys and link data across administrative sources.

Definitions of ID and DD used by the AIDD National Health Surveillance Workgroup differ from the criteria specified in the Developmental Disability Assistance and Bill of Rights Act of 2000.

"Although the definitions of ID and DD overlap, there are important differences that must be considered between them when creating operational definitions to identify people with IDD in national health surveys," the authors write.

Individuals with DD do not necessarily have limitations in intellectual functioning, while people with ID do not necessarily have functional limitations in all areas of DD delineated in the DD Act.

The AIDD National Health Surveillance Workgroup highlighted "essential domains to identify adults as having ID or DD in national services: intellectual functioning, communication, social skills, self-care, independent living skills, self-direction, economic self-sufficiency, mobility, impairment severity, age of onset, and expected duration."

ID and DD are "conceptualized as lifelong conditions first apparent during the developmental period, whose impact can be reduced through the application of supports," the authors add.

Clinical Recommendations

Several methodological considerations for collecting information regarding IDD, including focus on function vs diagnosis, single question vs multiple question sets, and self-reporting vs proxy reporting, were presented.

Using these parameters, the researchers constructed a "minimal question set" of three items or less to augment questions already present in the NHIS 2019. This set focused on intellectual functioning, independent living, and age of onset.

Additionally, the workgroup recommends further evaluation and testing of survey questions to make sure they are "valid, reliable, and appropriate." The group is collaborating with research staff at several agencies to fine-tune this process.

The workgroup also emphasized the increasing cultural diversity of the US population. They highlighted the importance of exploring "health patterns across race and ethnicity in combination with disability" and including residents of US territories.

Lastly, the authors congratulate the "notably high level of cooperation across federal agencies and the broader disability community." In addition, they recommend "continued use of this model for collaboration in future health surveillance activities."

"Electronic medical records are a source of administrative data that can be used in health services research to understand the health needs of adults with IDD," Havercamp noted.

She advised clinicians to enter all diagnostic codes into medical records, even those diagnoses that are unrelated to the clinical service provided.

"For example, if a woman with cerebral palsy is seen for an upper respiratory infection, the clinician should code the cerebral palsy — even if it is incidental to the purpose of the visit. And if she has an intellectual disability, that too should be recorded," Havercamp said.

Unique Health Needs

Commenting on the report for Medscape Medical News, Yona Lunsky, PhD, director of the H-CARDD Program and the Azrieli Adult Neurodevelopmental Centre at CAMH in Toronto, Canada, said the authors "eloquently explain the need for national level health surveillance data" for this population.

They also described their working group process used "to determine the best ways to assess for IDD presence in American adults," she added.

"If we don't count, they don't count," said Lunsky, who was not involved with report.

She emphasized that "adults with IDD do not have the same needs as children with IDD and they also have unique health needs relative to adults with other types of disabilities or health conditions."

For this reason, "it is essential that they be included in health surveillance studies in order to forecast their needs and plan appropriately," Lunsky said. "Inclusion of appropriate items in surveys like the NHIS are required to do this."

Havercamp, the report's lead author, noted that healthcare providers "should be prepared to meet the health needs of this population."

Havercamp's time was partially supported by a Cooperative Agreement funded by the Centers for Disease Control and Prevention. She has disclosed no relevant financial relationships. Lunsky reported that Havercamp is an investigator on a study that she is co-leading, but that she was not involved with any of the datasets described in the current publication.

Intellectual and Developmental Disabilities. Published online October 2019. Abstract

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