According to the National Health Interview Survey, an estimated 7.37 million people in the U.S. have an intellectual or developmental disability (I/DD) – the majority living with family caregivers. This is a very conservative estimate as the A Place in the World Housing Market Analyses are revealing there is often an estimated 30% more who are invisible in these national datasets. Adults with autism or other /I/DD (A/I/DD) living in their family homes are invisible in the tools used to estimate affordable housing needs in local communities. Moreover, housing and access to long-term support services to accommodate their needs outside of the family home are sparse and will not meet the demand. Over 1 million individuals with I/DD live with family members over the age of 60, and thousands remain on waitlists for multiple years.
Part of the barrier to the development of more housing solutions is a lack of data. Housing developers and policymakers do not have data on the needs and preferences of this population, because there are no numbers to draw from. It is too risky to tie up millions of dollars of private or government funding on a hunch, ideology, or anecdotal feedback.
In 2020, AHN Director Desiree Kameka Galloway developed an innovative process for market studies to collect some of this missing data. Using the A Place in the World report research, Desiree worked with the A/I/DD community in Denver to find out their needs and preferences for housing and support options. She then brought this information to local housing, service, and community-based leaders who identified barriers and opportunities to meet the demand. With all of this data in hand, Desiree and the Inclusive Housing Denver partners published the first in-depth housing market analysis report using the A Place in the World nomenclature for the autism and I/DD community. Leaders in Denver have used the data to implement policy and funding solutions for change. In order to quickly expand the process to different markets across the country, Desiree partnered with the First Place Global Leadership Institute to conduct six studies with more scheduled into 2024. Current cities beyond Denver include Phoenix, Arizona (where First Place AZ helps lead the Home Matters to AZ to ensure there is representation of the needs of adults with A/I/DD in housing advocacy strategies); Salt Lake City, Utah (Madison House Autism Foundation); Charleston, South Carolina (SOS Cares); Omaha, Nebraska (Autism Action Partnership; and Austin, Texas (Greenleaf Neurodiversity Community Center). Families and self-advocates in these regions will be able to use the data to advocate for their needs and systems change. Housing developers and community leaders can also use the data to make evidence-based decisions. They can build the trust of lenders and local municipality support as well as be competitive in grant applications.
In Utah, there are multiple cities preparing to conduct an A Place in the World Housing Market Analysis (Moab/Southeastern Utah and St. George/Southwestern Utah). The extra push, through a coalition called Neuro-Inclusive Utah, is due to an increasing focus on inclusion throughout the state. The housing research is part of a larger pilot project, the Autism After 21 Utah Project, to strengthen inclusion across multiple sectors, including in business and community spaces. Madison House Autism Foundation has been gathering a network of partners throughout the state for the project to collect data and strategize solutions that center autistic voices. Learn more about this statewide pilot project here.
In the recently completed data collection from Salt Lake City/Valley, project partners gathered data from nearly 400 disability self-advocates, family members, and aging caregivers, as well as focus groups in the Salt Lake Valley homeless community. They were asked about current living arrangements, support needs, and housing preferences in multiple categories. For example, they found that the top five physical amenities preferred by respondents include: adaptable design, extra-durable features, security features, smart-home features, and pedestrian-oriented locations. Having this type of information that is relevant to each city will be an enormous step forward in getting the support that the neurodivergent community needs and wants.