Institutional Rates Across States
By Sunlight Pertab
The institutionalization of individuals with Intellectual and Developmental Disabilities, or IDD, has long been a point of research in the United States. IDD is a broad term used to describe situations where intellectual disabilities and/or other disabilities are present [1]. For much of history, individuals with IDD were institutionalized, usually at higher rates than individuals who did not have IDD, due to misunderstandings and ableist ideologies. As research and technology have progressed, so has society’s understanding of what IDD is and how to better assist individuals with IDD. From federal, state, and community-based care, there have been major strides, albeit not perfect, in assisting individuals with IDD and their support systems.
There are various fiscal efforts that go towards individuals with IDD. These fiscal efforts can go toward community-based care, like home and community-based services (HCBS), or family supports. In these cases, monetary vouchers, direct cash payments to families, or direct cash payments to providers are given through state funding. There are also Medicaid options, which are health coverage provided by states via federal standards. This is a type of insurance and covers certain programs, providers, and treatments. Finally, there are out-of-pocket and private institutions that are separate from state-run programs. Now that the various types of fiscal efforts are understood, there are various types of supported living situations. These living situations are both state-funded and run. They guarantee a choice of where individuals live, who they live with, and that care will be administered with the understanding that the care may change over time. Depending on the situation, that guarantee goes to the individual living there and/or their caregivers [3]. For research purposes, these facilities are broken up into three categories: 16+ people, 7-15 people, and 6 people or less. This refers to the number of individuals with IDD living within that setting.
To highlight the major shifts in rates of institutionalization of individuals with IDD, a longitudinal study and analysis of data from 1967 to 2023 was conducted. This study showed that in 1967, almost 300,000 adults were living with IDD in the United States. Of those individuals, 29.1% lived in state-run IDD facilities with 16 or more people. By 2021, about 2.5 million adults were living with IDD in the United States. Of those, less than 1% lived in state-run IDD facilities of 16 or more people. When revisited in 2023, about 13,600 adults with IDD lived in 16+ people state-run IDD facilities. Of that number, 645, or about 4.75%, reported they had been involved in the criminal justice system [2].
A major reason for the decrease in individuals with IDD living in state-run facilities is fiscal efforts by state-run IDD agencies. In 2021, 45% of all adults who reported having IDD were receiving services via their state IDD agencies. These services were not as available, or available at all, in 1967. Moreover, there are few to no official statistics on how individuals with IDD encountered the criminal justice system in 1967. That being said, because of studies regarding ableism, prejudice, and the evolution of verbiage surrounding individuals with IDD, there is very clear evidence that people with IDD were wrongly placed in institutionalized settings. This is seen as recently as 2019, when a study by Carli Freidman found that states with higher disability prejudice institutionalized more people with IDD [4]. This study showcases that though major strides have been made for individuals with IDD, the systems in place are far from perfect and vary heavily from state to state.
Thankfully, academic institutions like the University of Kansas have been doing longitudinal analysis of various factors regarding individuals with IDD. The data that will be used ranges from 1977 to 2023. They break down how various fiscal policies, spending, revenue, and program-related trends vary by state and for the nation as a whole. This data, which includes an interactive map, is extremely helpful for understanding trends for individuals with IDD by state. For example, New York has a total of $12 billion in public funding for IDD-related services. $3.75 billion of the $12 billion goes toward HCBS waivers, which means that money goes toward helping with home and community-based care. Aside from fiscal-related data, the information gathered by the University of Kansas also showcases the living situation breakdown of individuals with IDD. As of 2023, New York had 2,755 individuals living in 16+ person situations, 16,906 individuals living in 7-15 person situations, and 35,313 individuals living in 6 people or fewer situations. Comparing these statistics with a state like Texas, which gets a total of $2.97 billion in public funding for IDD-related services, it is easy to see how looking solely at national statistics can be tricky. In Texas, $1.85 billion goes toward HCBS waivers, and their data over the last 15 years show a downward trend in fiscal effort for IDD services [3]. The reasons for differences in funding or funding trends are directly linked to population size, political majorities, the strength of IDD advocacy in the area, and much more. Understanding the data state to state is incredibly important to understand the needs of people with IDD, in addition to influencing policy relating to the IDD community.
To fully understand the scope of the data, each state's statistics must be dissected. While that will not be happening in this article, it is imperative to understand some facts across states to understand the system of institutionalization through a modern lens. For example, almost all states had a dip in costs associated with IDD care. With a declining population in state-funded institutions during the 1990s, by the 2010s there was an uptake in community-based care and HCBS waivers that were granted nationwide. That being said, certain states have a curious track record. In 2020, Montana saw a stark decline in state IDD funding. The funding was almost zero and picked up a bit until 2023. According to state institutionalization records, the number of people with IDD in 16+ person living situations stayed relatively stagnant from 2020-2023. However, the state facilities for 7-15 people have been at zero since 2020. In 2019, there were 376 people with IDD living in 7-15 person facilities and 1,528 individuals with IDD living in 6 people or fewer environments. In 2023, those numbers were zero and 1,823. Idaho, a state next to Montana, also has little to no state IDD funding, a trend which started around 2010. Due to this, there has been a steady decline in individuals living in 6- or more-person settings. The data indicates that most 6-person and under living situations are private residences or facilities, which means the decline in state funding for IDD puts more of a strain on families, individuals with IDD, and the private sector. Contrasting this with a state like California, where there has been a steady increase in state IDD funding, it begs the question of what happened in Montana and Idaho that affected their state funding but not California, and how did it affect the IDD communities in those respective states?
In order to understand the history and current climate of institutionalization of individuals with IDD, it is imperative to understand how nuanced and broad the research is. There is still so much that is misunderstood about IDD and what role the state or federal government should play in it. At the same time, there have been very necessary and helpful advancements that have improved the treatment of individuals with IDD, including a reduction of wrongful institutionalization. Thus, it is the responsibility of researchers and advocates to continue to fight for these positive trends until society has a full understanding of IDD.
References
[1] U.S. Department of Health and Human Services. (2021). About intellectual and Developmental Disabilities (idds). Eunice Kennedy Shriver National Institute of Child Health and Human Development. https://www.nichd.nih.gov/health/topics/idds/conditioninfo
[2] (2023). RISP data bytes: Institutionalized adults with IDD, 1967 to 2021. Institutionalized Adults with IDD, 1967 to 2021 | Institute on Community Integration Publications. https://publications.ici.umn.edu/risp/data-bytes/institutionalized-adults-with-idd-1967-to-2020
[3] University of Kansas. (2023). State profiles. State of the States in Intellectual and Developmental Disabilities. https://stateofthestates.ku.edu/state-profiles
[4] Friedman, C. (2019). The Relationship Between Disability Prejudice and Institutionalization of People With Intellectual and Developmental Disabilities. Intellectual and Developmental Disabilities, 57(4), 263–273. https://doi.org/10.1352/1934-9556-57.4.263
