Skip to content

Health Surveillance for Adults with Intellectual Disability


This study built on significant previous efforts designed to gather and catalogue health indicators in the population of adults with ID, both to provide methodologically sound investigation of health disparities as well as to establish accurate and valid benchmarks for health improvement in this population. 

This grant was a collaboration between CDDER and the Human Services Research Institute (HSRI) to develop foundational work to enhance health surveillance of adults with intellectual disability. Grant activities were completed in 2011. This project was funded through a Research Topic of Interest (RTOI) grant, awarded by the Association of University Centers on Disabilities (AUCD) and funded through a cooperative agreement with the Centers for Disease Control and Prevention (CDC) National Center on Birth Defects and Developmental Disabilities (NCBDDD).


Developing an Operational Definition of Intellectual Disability for the Purpose of National Health Surveillance (pdf)

Compendium of Health Data Sources for Adults with Intellectual Disabilities (pdf)

Recommendations for Expanding Surveillance of Adults with Intellectual Disability in the United States (pdf)

Grant aims and activities

  1. Develop an operational definition(s) of ‘intellectual disability’ to be used in health surveillance activities. This process included a review of national public health datasets (for the general population) for definitions of disability/intellectual disability that would allow monitoring of the health of people with intellectual disability, a review of the definitions used in population-specific datasets (e.g. NCI and Special Olympics) for their applicability to the population beyond the sample population, the facilitation of a national consensus panel review of current data set definitions of ID, and development of priority variable indicators. 
  2. Complete a concise summary of national datasets that capture information about people with intellectual disability, along with a critical review of their applicability for collection of health indicator data. A pdf of the compendium can be viewed through this link.
  3. Make recommendations to ensure health surveillance activities are actually representative of the ID population, given the diverse living situations and conditions that comprise this population. To accomplish this goal, the project team conducted focus groups and structured interviews with community members regarding strategies to outreach and include groups that are typically under-represented in sampling, and completed a statistical modeling and data match feasibility study to establish recommendations for methodologies to gather data on representative samples of people with ID. 


From a national health surveillance perspective, the overall picture of adults with intellectual disability (ID) lacks clarity. Health indicators and outcomes for adults who receive supports are captured in a wide range of population-specific data sets across the country but there is limited public reporting of this data. While anecdotal and population specific studies have repeatedly shown that people with intellectual disability are more likely to experience poor health outcomes, there is very limited capacity in national surveys of population health to describe even basic health indicators in people with ID. As noted by an adult with intellectual disabilities in testimony to the US Surgeon General (2000): “We’re invisible in the data. We can’t make people believe we need more services if we don’t have data to back us up.” 

keto weight loss calculator weight loss and blood pressure correlation dr oz weight loss diets anxiety medication weight loss does dr nking a lot of water help you lose weight advertisement for diet pills foods to eat on a keto diet what diet pills work best over the counter youtube weight loss hypnosis what is good for weight loss keppra weight loss 7 day water fast weight loss how to lose weight without trying sakara life weight loss best fda approved weight loss pills weight loss workouts sleeping pills weight loss weight loss pills like oxyelite pro b12 injections vs pills weight loss cincinnati weight loss clinic what are the most effective weight loss pills hcg diet plan pills lipozene diet pills at walmart how dangerous is the keto diet can you have watermelon on keto diet weight loss pills seen on tv weight loss pills and cleanse tell me what to eat to lose weight how many carbs can you eat on keto home workouts for women to lose weight how many carbs should you eat a day on keto keto diet muscle soreness

buy viagra india after sex pregnancy prevention pills viagra dose for ed top 10 male enhancement pill diamond male enhancement pill natural pills for sex drive what can be done for erectile dysfunction doctor created penis pills do penis enlargers really work how does hcg increase testosterone raise testosterone supplements viagra overdose male libido enhancement products top rated male enhancement pills review food to increase libido in male how to sexually arouse a lady sex drive stimulants modern man testosterone booster viridex xt pro grade testosterone booster 12k male enhancement pills fda stag male enhancement pills exercise to increase testosterone level jack napier penis enlargement pills will you gain muscle by taking testosterone pills what pills make your penis huge massage oil for sex enhancement chinese sex enhancement pills best testosterone booster for males over 40 f natural testosterone enhancement pills x2 male enhancement testosterone shots vs pills cialis 5mg coupon

does cbd oil help copd cost to extract cbd oil arthritis cbd oil cbd oil cause anxiety attack cbd oil how long to work cbd oil profit margin hemp oil with cannabinoids where to buy cbd oil in kentucky ct cbd oil do you need a permit in texas to sell cbd oil chronic fatigue cbd oil how to use cannabis oil licensing needed in utah for cbd oil recommended cbd dosage for anxiety state laws for cbd oil owners how to take out cbd oil from de plastick case cbd oil is amazing for pain best cbd gummies for sleep cbd oils or hemp oil cbd oil stores in worland wyoming how much cbd oil do i give my child cbd oil message board reddit anxiety cbd oil what is gold grade cbd oil cannaroo cbd oil affiliate who is the leader of the united states for cbd oil are cbd oil from hemp legal in alaska do i need a card to buy cbd oil for my minor child how often cbd oil under the tongue electronically traded funds for cbd oil cbd oil anxiety dosage ml is pure essence cbd oil an scam