New Tool Determines Health Risks of Social Interactions for People with IDD

New Tool Determines Health Risks of Social Interactions for People with IDD

 

As social isolation measures continue, people who live with IDD are more likely to experience serious problems like loneliness or even abuse or neglect. A new tool from Health Risk Screening, Inc. helps weigh the benefits of social interaction vs. the risks of COVID-19 exposure for these individuals.

 

 

(Clearwater, FL) January 12, 2021—Research shows that people who live with intellectual or developmental disabilities (IDD) are up to three times more likely to die from COVID-19 and its complications when compared to people without IDD.(1) Those living with IDDs are more likely to live in group home settings and are often more reliant on support givers for help with activities of daily living. But these people, and the people who support them, have been subject to the same social distancing and isolation recommendations as the general population. Unfortunately, this disruption to the norm does more than interrupt routines and hinder personal growth and development—it also places individuals with IDD at greater risk of serious issues like abuse or neglect.(2)

Dr. Craig Escudé, President of Health Risk Screening, Inc., says, “The pandemic disproportionately affects people who live with IDD, making them more vulnerable to problems like loneliness and disruptions in services providing educational or therapeutic support. There must be a way to help decide whether it’s appropriate for people with IDD to continue on with certain social activities connecting them with others which helps reduce risks of isolation, depression and anxiety associated with limited social contact.”

Like most Americans, people with IDD are socially distancing, avoiding activities once enjoyed away from their homes. The reasons why are multifactorial:(3)

  • People living with IDD are more likely to have underlying medical conditions, such as chronic lung disease,
  • They often rely on various support givers for help with activities of daily living,
  • Standard safety precautions and preventative measures may not be understood, and
  • They may not be able to verbally communicate to others symptoms of illness.

But this massive disruption in health, home, and community services is already having profound effects on the estimated 7 million people in the United States who live with IDD.(4) Some studies show up to 70% of people living with IDD have lost at least some of their normal health services as a result of COVID-19, and as many as 74% have lost one or more services entirely. (4)

Many of these services, such as special education programs for youths with IDD, rely on interpersonal relationships between the youth support givers, who may help with physical positioning, toileting, feeding, among other needs.(5) Often, these same support givers are essential for helping prevent infection among people with IDD.(6) When these relationships are severed, people living with IDD may fall further behind academically, or they may suffer from regressive behavioral changes related to the loss of a structured daily routine.(5)

According to Dr. Escudé, support givers and family members need a tool to help weigh the benefits and risks of a person living with IDD returning to normal activities. HRS developed such a tool, called the Risk/Benefit Return to Activity Form, to help guide supporters in such decisions.

The Risk/Benefit Return to Activity Form addresses several key areas of risk, such as personal, situational, and health risks, to help determine whether the benefits of attending a certain activity outweigh the potential harm. Each section of the form includes questions such as:

  • Can the person follow the social distancing protocol of remaining 6 feet away from others independently?
  • Is the level of community spread in the location of the activity considered reasonable by health authorities?
  • Does the person have any immunocompromising conditions?

The benefits are also weighed with questions like:

  • Is socialization important to help manage or improve the person’s anxiety, mood, mental status, behavior, or mental health disorder?
  • Does the person earn a wage when participating in this activity?

Support personnel who complete this form as part of team meetings can then share it with primary decision-makers to come to a consensus as to whether or not the person with IDD should participate. The form is available to download for anyone who regularly cares for a person with IDD.

Dr. Escudé says, “Just like others, people who live with IDD enjoy social activities which enrich and enhance their lives. Our tool can help those who support people with IDD decide whether the benefits of such activities outweigh the risks of potential exposure to COVID-19.”

 

 

Sources

  1. Rabin, Roni Caryn. “Developmental Disabilities Heighten Risk of Covid Death.” The New York Times, The New York Times, 10 Nov. 2020, nytimes.com/2020/11/10/health/covid-developmental-disabilities.html.
  2. King, Dianne. “Risks for Harm Skyrocket for People with Disabilities during Pandemic.” The SAFE Alliance, 28 May 2020, safeaustin.org/risks-for-harm-skyrocket-for-people-with-disabilities-during-pandemic/.
  3. “People with Disabilities.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, Sept. 2020, cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-disabilities.html.
  4. State of the Science on COVID-19 and People with IDD. 2020, aaidd.org/docs/default-source/publication/state-of-the-science-on-covid-19-and-people-with-idd—dec-2020.pdf?sfvrsn=25893421_0.
  5. Constantino, John N., et al. “The Impact of COVID-19 on Individuals With Intellectual and Developmental Disabilities: Clinical and Scientific Priorities.” American Journal of Psychiatry, 28 Aug. 2020, ajp.psychiatryonline.org/doi/10.1176/appi.ajp.2020.20060780.
  6. “People with Intellectual and Developmental Disabilities Disproportionately Affected by COVID-19.” National Institutes of Health, U.S. Department of Health and Human Services, 28 Aug. 2020, nih.gov/news-events/news-releases/people-intellectual-developmental-disabilities-disproportionately-affected-covid-19.

Government Study Using the HRST

Two separate, independent studies have been completed reviewing the Health Risk Screening Tool (HRST) to both mortality trends and life expectancy trends. Both studies support a correlation between the HRST Health Care Level and mortality dynamics.

One of the independent studies is an ongoing examination being conducted by the Georgia Department of Behavioral Health and Developmental Disabilities (DBHDD).

Georgia DBHDD has used the HRST as a frame of reference for the last five years in the Department’s annual Mortality Reports. Each year the correlation between health risk score and mortality has remained consistent.

The primary results of the GA DBHDD analyses indicate two main points. First, models for 2013 to 2017 are very similar in that age and health risk scores were the two main predictors of death (and not gender or residential setting.) Second, the model indicates possible opportunities to identify risk of death associated with age and HRST scores and to determine additional services, supports or actions needed.

Not only can you adjust resources to mitigate risk, but coordinate and design specific programs for people identified as presenting high risk in a range of areas.

The question remains “Now that we know this, what can we do with the information?” Not only can you adjust resources to mitigate risk, but coordinate and design specific programs for people identified as presenting high risk in a range of areas. This could help with training direct support staff and designing targeted interventions.

This research and its potential impact on preventable deaths among those with I/DD is only the beginning! This could have powerful implications for health and safety of high risk individuals with disabilities, informing system-wide improvements in both surveillance and response to risk. Imagine if these efforts could lead to I/DD mortality rates that are similar to the general population. This data challenges us to envision a future for those with I/DD that is much different than in the past – a future where the standard is a healthy, well-lived life!

Get the full 2017 mortality report: GA Annual Mortality Report (PDF).

Can the HRST Predict Life Expectancy?

In 2015 a study was done by Georgia’s Department of Behavioral Health and Developmental Disabilities (DBHDD) on mortality, mortality trends, and related information to the health and care received by people by the Georgia DBHDD. What was needed was a straight-forward, usable measure of health condition and health risk. ICD codes were too complex and hard to use.

GA’s DBHDD is a long-time user of the Health Risk Screening Tool (HRST.) They decided to use the HRST data as a measure of health risk to model mortality. What they found was that it was not residential setting, gender or part of the country that was associated with mortality but rather the two main predictors of death were:

  1. Age
  2. HRST Health Risk Scores

Gwendell Gravitt, Jr, Director of Office of Performance Analysis, Division of Performance Management & Quality Improvement for DBHDD and Catherine Ivy, Director of Community Services, Division of Intellectual and Developmental Disabilities for DBHDD presented their incredible report findings at the 141st American Association on Intellectual and Developmental Disabilities (AAIDD) annual meeting.

The goal was not just to get information but to use it to make system improvements to quality of care.

Their presentation, called “Understanding Mortality Risk in Order to Prevent it”, specifically featured the Health Risk Screening Tool and how the scores arrived with its use were used in their study. The goal was not just to get information but to use it to make system improvements to quality of care. They were able to do just that…

Mr. Gravitt and Ms. Ivy will be presenting their updated 2016 report at the Home and Community Based Services Conference in Baltimore, MD this August. Their new report will show how they were able to use the information in the 2015 report to reach their goal.

The study is being updated to include the 2016 data and it will be presented at the HCBS conference in Baltimore, August 30th, 8:30 AM.

To see the complete 2015 report, click here.