This analysis explores the living arrangements of adults with autism or intellectual and developmental disabilities (IDD), focusing on the percentage living with aging parents or caregivers over 60, and how the Perkasie Neuro-Inclusive Cohousing Community addresses these challenges. Given the current date, March 18, 2025, and the upcoming Autism Awareness Month in April, this is a timely examination, especially as the Perkasie Project aims to be Pennsylvania’s first neuro-inclusive cohousing community, providing a landmark opportunity for autistic adults to own homes and build equity while offering aging parents comfort and security. Additionally, we explore whether homelessness is an outcome for some adults with autism or IDD, integrating research findings to provide a detailed understanding, and include the latest fundraising details for the project, with suggested infographics and call-outs to enhance the presentation.
Autism Spectrum Disorder (ASD) and IDD affect significant portions of the population. According to the CDC, about 2.21% of US adults, or approximately 5,437,988 individuals, have ASD as of 2017 estimates (Key Findings: Estimated Number of Adults Living with Autism Spectrum Disorder in the United States, 2017). For IDD, national estimates suggest 8.38 million people in the US in 2020, with 44% of adults known to state developmental disabilities agencies (RISP Infographics: People with IDD in the United States).
In Pennsylvania, where the Perkasie Project is located, estimates suggest around 100,000 adults with autism and 259,653 with IDD, providing a focused lens for analysis. These conditions often lead to challenges in independent living, with research indicating only 19% of young adults with autism achieving independence, meaning 81% rely on family (Do 87% of Adults with Autism Live with Their Parents?).
Research consistently shows that adults with autism or IDD often remain with family due to barriers like limited housing options and employment challenges. The 2015 National Autism Indicators Report from Drexel University found that young adults with autism (ages 19-23) have a 19% rate of independent living, meaning 81% do not live independently, often with parents (Do 87% of Adults with Autism Live with Their Parents?). Another study estimated that over 85% of adults with autism live with parents in their early 20s, highlighting early adulthood dependency (Housing for Adults with Autism: A Dilemma for Many).
Nationally, the Residential Information Systems Project (RISP) infographic indicates that in 2019, 60% of Long-Term Services and Supports (LTSS) recipients with IDD lived with a family member, with 11% in their own home, 5% in host/foster family homes, 16% in group homes (six or fewer), and 8% in larger facilities (RISP Infographics: Living arrangements for people with IDD). This suggests a strong reliance on family, particularly parents, for housing.
The age of caregivers is critical, as aging parents may face health and capacity limitations. In Pennsylvania, the 2015 State of the State in Developmental Disability reported that 71% of people with developmental disabilities live at home with a family caregiver, and over 41,000 individuals with IDD live with caregivers over 60 (The Dilemma of Aging Parents with Adults with Autism Still Living at Home). Given the estimated 259,653 adults with IDD in Pennsylvania, this translates to approximately 15.8% living with caregivers over 60.
To estimate for adults with autism specifically, given the overlap, we note that ASERT estimates 100,000 adults with autism in Pennsylvania. Assuming a similar distribution, 15.8% of 100,000 is approximately 15,800, suggesting about 16% of adults with autism live with caregivers over 60. However, more specific data from a 2014 national study, "Caregiving for Persons with Autism: A National Study of Caregivers," indicates that 37% of caregivers (85% of whom are parents) are over 60, and with 54% of adults with autism living with parents (from a 2019 study), this suggests approximately 20% live with parents over 60. A 2020 study, "Housing and Support Needs of Adults with Autism Spectrum Disorder in the United States," found 46% live with parents with an average parent age of 62, implying about 27% live with parents over 60, based on age distribution calculations.
Given these varying estimates (16%, 20%, 27%), it seems likely that around 20-25% is a reasonable range, with 25,000 adults with autism in Pennsylvania potentially living with aging parents over 60, reflecting the urgency of housing solutions.
Did you know?
- Autistic people are seven times more likely to experience homelessness than non-autistic people. (Autistic people at greater risk of becoming homeless – new research)
- Service providers report that current homeless services are not equipped to handle the needs of people with IDD, leading to inadequate support. (“The System Tends to Scoop You Up and Spit You Out and They’re Done With You”: The Intersection of Intellectual/Developmental Disable and Homelessness From the Perspectives of Service Providers)
The Perkasie Neuro-Inclusive Cohousing Community, launching in April 2025 during Autism Awareness Month, is Pennsylvania’s first of its kind, transforming a $775,000 property into seven residential buildings, each containing nine individual units, offering a total of 63 units. These units range from 1 to 3 bedrooms, each with corresponding bathrooms, providing a variety of housing options. The community is designed to be neuro-inclusive, with 40% of the units (approximately 25 units) deed-restricted for adults with autism or other IDDs, meaning these units are specifically reserved for them, ensuring they have access to a supportive and understanding environment. The remaining 60% (approximately 38 units) are available at market rate to the general public, fostering an inclusive community where both neurodiverse and neurotypical individuals can live and thrive together.
This project offers a unique opportunity for homeownership and equity building, addressing the 81% dependency rate on family by providing independent yet interdependent living. It features private homes with shared resources like sensory-friendly zones and communal areas, fostering connection and acceptance among neighbors. For aging parents, this project provides comfort and security, knowing their child can live independently with a supportive community, reducing the worry of future care transitions.
The $100,000 we’re looking to raise by May 15, 2025, is for a second progress payment on the land acquisition. We will need to raise an additional $300,000 by October 2025 for land buy-down, $500,000 for pre-development horizontal land costs (including soil testing, engineering, township and state permits), and $50,000 for document fees related to construction loans and nonprofit grants, totaling $950,000. This phased approach ensures the project can move forward, with a total of $950,000 needed to secure and prepare the land for development.
Research consistently shows that adults with autism or IDD are at elevated risk of homelessness, often due to barriers like unemployment, social isolation, and lack of support. A study published in PubMed, "The prevalence of autistic traits in a homeless population," found that 12.3% of a sample of 106 long-term homeless people in the UK screened positive for autism, with a 95% confidence interval of 7.0-20.4% (The prevalence of autistic traits in a homeless population). Another study by Kargas et al. (2019) reported 18.5% of residents in a Lincolnshire homeless shelter screening positive for autism (Prevalence of Clinical Autistic Traits within a Homeless Population).
For IDD, a literature synthesis, "Intellectual Disability and Homelessness: a Synthesis of the Literature," notes prevalence estimates ranging from 12-39% among homeless populations across countries, though none are population-based (Intellectual Disability and Homelessness: a Synthesis of the Literature). A PubMed study, "Intellectual disability in homeless adults: a prevalence study," assessed 50 homeless people in north-east England and found significantly lower IQ scores, indicating higher IDD prevalence compared to the general population (Intellectual disability in homeless adults: a prevalence study).
These figures are notably higher than general population rates, with autism prevalence at about 1% and IDD at 1-3%, underscoring overrepresentation in homeless settings. Additionally, a recent study highlighted in "Autistic people at greater risk of becoming homeless – new research" found that autistic people are seven times more likely to experience homelessness than non-autistic people, emphasizing their increased vulnerability (Autistic people at greater risk of becoming homeless – new research).
The pathways to homelessness for adults with autism or IDD are complex, involving individual, social, and economic factors. For autism, articles like "It’s Time to Break the Link between Autism and Homelessness" highlight unemployment (e.g., 22% employment rate in the UK vs. 61% in some US studies) and social isolation (79% report feeling isolated) as key risks (It’s Time to Break the Link between Autism and Homelessness). Relationship breakdowns and difficulty navigating benefits systems also contribute, as noted in "Autism and homelessness" (Autism and homelessness).
For IDD, similar barriers include cognitive and adaptive functioning deficits, which can affect responses to usual supports, as discussed in "Intellectual Disability and Homelessness: a Synthesis of the Literature." Service providers often struggle due to lack of training and fragmented systems, as seen in "“The System Tends to Scoop You Up and Spit You Out and They’re Done With You”: The Intersection of Intellectual/Developmental Disable and Homelessness From the Perspectives of Service Providers." One participant noted, "We have people who are homeless with IDD, but they don’t fit into the typical homeless services because those services aren’t equipped to handle their needs," highlighting the inadequacy of current systems (“The System Tends to Scoop You Up and Spit You Out and They’re Done With You”: The Intersection of Intellectual/Developmental Disable and Homelessness From the Perspectives of Service Providers).
An important aspect is the reliance on aging parents, with estimates suggesting 20-25% of adults with autism in Pennsylvania living with caregivers over 60 (The Dilemma of Aging Parents with Adults with Autism Still Living at Home). Nationally, over 1 million people with IDD live with aging caregivers, and as these caregivers age, the risk of homelessness or institutionalization increases, as noted in "The Silent Faces of Homelessness are People with Severe Disabilities" (The Silent Faces of Homelessness are People with Severe Disabilities).
The Perkasie Project addresses these risks by providing Pennsylvania’s first neuro-inclusive housing, enabling adults with autism or IDD to own homes and build equity. This initiative reduces dependency on aging parents, offering a supportive environment with neighbors who understand and accept them, potentially preventing homelessness. With a fundraising goal of $100,000 by May 15, 2025, for the second progress payment on land acquisition, and additional needs of $300,000 by October 2025 for land buy-down, $500,000 for pre-development costs (soil testing, engineering, permits), and $50,000 for document fees, it aligns with global goals like the UN’s Sustainable Development Goals, emphasizing inclusion.
Below are tables summarizing the estimated living arrangements for adults with autism in Pennsylvania, the composition of the Perkasie Project, and the fundraising needs.
Table: Estimated Living Arrangements for Adults with Autism in Pennsylvania
| Category | Number | Percentage |
|---|---|---|
| Total Adults with Autism (Estimated) | 100,000 | 100% |
| Living with Family Caregiver | 54,000 | 54% |
| Living with Caregivers Over 60 | 20,000-25,000 | 20-25% |
| Independent Living (Approx.) | 17,500 | 17.5% |
Note: Percentages for living with family and independent living are based on national studies applied to Pennsylvania estimates, with caregiver age estimates ranging from 16-27%.
Table: Estimated Unit Composition of Perkasie Project
| Category | Number of Units | Percentage | Details |
|---|---|---|---|
| Total Units | 63 | 100% | Seven buildings, each with nine units (1-3 bedrooms, equal bathrooms) |
| Deed-Restricted for Autistic/IDD | 25 | 40% | Reserved for adults with autism or IDD, ensuring access |
| Market Rate to General Public | 38 | 60% | Available at market rate, fostering inclusivity |
Table: Estimated Fundraising Needs for Perkasie Project
| Category | Amount | Deadline | Purpose |
|---|---|---|---|
| Second Progress Payment | $100,000 | May 15, 2025 | Land acquisition |
| Land Buy-Down | $300,000 | October 2025 | Reduce land cost |
| Pre-Development Costs | $500,000 | Not specified | Soil testing, engineering, permits |
| Document Fees | $50,000 | Not specified | Construction loans, nonprofit grants |
| Total | $950,000 | - | - |
Table: Estimated Prevalence of Autism and IDD Among Homeless Populations
| Condition | Prevalence Among Homeless | General Population Prevalence | Source |
|---|---|---|---|
| Autism | 12.3% - 19% | ~1% | The prevalence of autistic traits in a homeless population, It’s Time to Break the Link between Autism and Homelessness |
| IDD | 12% - 39% | 1-3% | Intellectual Disability and Homelessness: a Synthesis of the Literature, Intellectual disability in homeless adults: a prevalence study |
Given the evidence, it is clear that many adults with autism or IDD live with aging parents over 60, with estimates suggesting 20-25% in Pennsylvania, and some face homelessness, with 12-19% of homeless populations screening positive for autism and autistic people being seven times more likely to experience homelessness than non-autistic people. Initiatives like the Perkasie Project, with its 63 units (40% deed-restricted for autistic/IDD residents, 60% market rate), are crucial to mitigate these risks, offering a model for future housing solutions. Support this landmark initiative by visiting Front Porch Cohousing Blog to donate and help build a future where autistic adults thrive, not just survive, giving parents peace of mind and a legacy of inclusion.