By Michael Rock:
One of the key inequalities that people with intellectual and developmental disabilities face in relation to their peers without disabilities is a considerably shorter lifespan. Fortunately, new insights into the roots of this problem better allow us to understand and solve it.
A recent study from researchers at Australia’s University of New South Wales found several unique obstacles people with intellectual and developmental disabilities face in the healthcare system. These include a lack of accessible information about preventative care for people with such conditions, as well as improper training of healthcare providers in working with these patients, often leading to discrimination in getting the care they need.
People with autism are more likely to have a shortened lifespan if they struggle with social and daily living skills, though evidence suggests that many of the existing tactics used to help them in those areas can greatly lead them to a longer life.
While genetic conditions can also shorten their lifespans in relation to those without intellectual and developmental disabilities, this is becoming less of a problem as caregivers and health professionals increasingly learn how to notice health problems and changes they may experience. The deinstitutionalizing of adults with intellectual and developmental disabilities in favor of family care and group home settings has also helped reduce premature deaths. All of these factors have allowed the population of Americans with these disabilities reaching their sixties and older expected to grow to over 1.9 million in 2020, a 300% increase over the past twenty years.
Despite these improvements, more can be done. One possible improvement is the Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population (HEADs UP) Act, a bipartisan piece of legislation that would legally recognize people with intellectual and developmental disabilities as a Medically Underserved Population, thus opening the gates for them to access dozens of federal health care programs that reduce inequalities in getting the medical and dental support they need.
As the life expectancy of people with intellectual and developmental disabilities gradually increases, more research, positive legislative achievements, and understanding of their particular needs should eventually reduce or eliminate the age gap, hopefully sooner than we think.
Michael Rock is a New York City-based reporter and self-advocate with autism. A graduate of Brandeis University, his work has appeared in Kings County Politics, Chelsea Now, Our Town, Queens County Politics, and WhoWhatWhy.