Pioneering Study for Adults with Autism and Intellectual/Developmental Disabilities Sheds Light on Invisible Housing Crisis

A comprehensive report that provides the data needed to drive a more neuro-inclusive local housing supply has been released by First Place® AZ, an Arizona nonprofit with the vision of ensuring housing, healthcare and community options are as bountiful for people with autism and other neurodiversities as they are for everyone else. Report findings recognize that current housing in Greater Phoenix cannot meet demand—financial, physical and cognitive—for adults with autism and/or other intellectual/developmental disabilities (A/I/DD).

The Greater Phoenix Housing Market Analysis (GPHMA), conducted by the First Place Global Leadership Institute Make Waves Center for Community Development, is the first-ever study to comprehensively address the housing needs and preferences of adults with A/I/DD. The analysis educated consumers on their potential options, collected data on their needs and preferences, identified barriers to meeting demand and explored how public, private, nonprofit and philanthropic sectors can work together on market solutions.

Housing is financially out of reach for most adults with A/I/DD. The National Low Income Housing Coalition estimates that to live in the Phoenix metropolitan area in 2022, a person must earn $43,640 annually to afford a one-bedroom apartment or work 66 hours a week at minimum wage. Despite a desire to work, only about 25% of adults with any disability are employed in Maricopa County, according to the Arizona Developmental Disabilities Planning Council.

“Without housing options, this population lives with family members until crises force rushed placements or even homelessness. These consequences are both traumatic for the individual and their family and expensive for our state and communities,” says Denise D. Resnik, First Place AZ founder and president/CEO and mother of an adult son with autism. “Lack of housing options too often prevents the neurodiverse population from moving beyond their family home as integrated, contributing members of society with the support of those who know them best.”

Due to the lack of affordable, accessible housing options, 47% of adults with A/I/DD reported concern that they would experience homelessness; 85% of GPHMA respondents who took the Spanish version of the survey reported concern their loved one will be forced to live in a group home or host home/adult foster care.  The two highest-rated development types, including segmenting self-advocate responses, were mixed-use, neuro-inclusive properties (54%) and neuro-inclusive, planned communities (43%). Approximately 87% of respondents have experienced loneliness and more than 60% have experienced discrimination, abuse or exploitation due to their disability.

Options in existing housing stock may be inaccessible for adults with physical or cognitive challenges. Adults with A/I/DD can also have issues with reading and writing, executive functioning, communication and/or social interactions. This makes navigating complex and often disconnected systems required to access housing more daunting, according to the report. Individuals may need sensory-responsive features such as natural, low-voltage versus fluorescent lighting; technology to support executive functioning; built-in structural features for age-in-place options; or wayfinding strategies and signage.

The report outlines systemic challenges, including:

  • The undetermined number of Arizona adults with A/I/DD.
  • Data on the need for affordable housing does not capture the needs of those housed in aging family caregivers’ homes who likely cannot afford housing without family support.
  • Housing navigation programs, like those used by seniors or veterans, are not available to help adults with A/I/DD and their families navigate the complex and disconnected systems of housing assistance, long-term support services and other public benefits.
  • No incentives or mortgage products are available for neurodiverse families to assist their loved ones in purchasing a home that can be held in a trust to protect the asset from those who might exploit or take advantage of an adult with A/I/DD.

“At the very least, housing for a minimum of the 63,000 individuals estimated to be living in Greater Phoenix with a caregiver over age 60 must be a goal within the next decade,” says Maureen Casey, director of the First Place Global Leadership Institute Centers for Applied Research and Public Policy. “Meeting the housing needs of people with A/I/DD will result in a healthier, more stable population that can significantly reduce Medicaid costs, increase quality of life, and prevent involuntary displacement and homelessness.”

The report also identifies an array of recommendations needing cross-sector support, including:

  • Identification and prioritization of low-income adults with A/I/DD in local housing needs assessments and waitlists at Public Housing Authorities.
  • Development of a homeownership guide to help individuals with A/I/DD and their families understand how to invest in housing stability when financially feasible.
  • Development of a tax incentive for Arizona families who can invest in housing for their  low-income, dependent family member with A/I/DD.
  • Prevention of unintended discrimination, offering educational opportunities to property owners, managers and developers so they can better understand how people with A/I/DD access their long-term support services, what they offer as potential tenants, and their unique financial and legal arrangements.
  • Inclusion of adults with A/I/DD in local diversity, equity and inclusion efforts to increase the visibility of Greater Phoenix’s neurodiverse population.
  • Identification of new and existing funding sources to build neuro-inclusive supportive housing and help close the gap.

“This report serves as a guide for data-driven solutions, as well as the development of a housing roadmap outlining a plan on how to prevent the displacement or homelessness of adults with autism and intellectual and developmental disabilities,” says Desiree Kameka Galloway, First Place Global Leadership Institute advisor.

According to Joyce Millard Hoie, First Place board vice chair, former executive director of Raising Special Kids and mom to an adult son with autism, “It is data driven, factual, collaborative and focused on key issues that influence both housing policy and the persistent, real-world problems of affordability and access.”

More than 160 people, 20 of whom speak Spanish, and 24% of whom are self-advocates, participated in the survey from August to September 2022. The study examined housing in Phoenix, Mesa, Glendale, Scottsdale, Tempe and Surprise. Bank of America, Make Waves Family Foundation, Stardust Foundation and Dominium sponsored the study. The GPHMA report is available online in English and Spanish here.

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