Establishing housing and support systems for adults with autism and/or developmental disabilities (DD) takes creativity, tenacity and an openness to roads less traveled. With the diversity of needs, preferences, levels of support and access to resources, there is no GPS tool for a direct route to a single solution. Instead, think of this “how-to” guide as a roadmap with potential paths to desired destinations.
We will explore the essential steps and considerations for establishing housing and support systems for autistic adults and/or others with DD, drawing on the expertise and successful practices of First Place AZ, its collaborators and global community of organizations with similar missions. Whether you are a self-advocate, family member or professional, the goal of this guide is to provide you with insights and knowledge to create a supportive and inclusive living environment tailored to the individual’s unique needs.
If you have not yet read Preparing for Adulthood, start there before proceeding with these next steps.
Clarifying Housing Goals and Needs
You’ve decided to live independently. Now refine your search by assessing your level of support needs and personal preferences.
Clarifying your housing goals and needs is a crucial first step. This process involves reassessing the individual’s level of support needs and desired service delivery model/s, identifying housing and development types preferred, and thinking about activities or community spaces most meaningful to them.
This process should be informed as much as possible by the adult with autism and/or DD. Engage the individual in discussions about their likes, dislikes and aspirations. Consider factors such as preferred living environment (urban, suburban or rural), proximity to family and friends, and access to recreational activities and public amenities. You can start this conversation by:
- Setting aside time to explore the A Place in the World report and housing market guide and using the worksheets at the back of the report to track your preferences. A Place in the World (APITW) provides valuable insights into various housing options and support systems for adults with autism and/or DD. These resources offer comprehensive information on different housing models, funding sources and best practices.
- Watching videos in listings from the Autism Housing Network Directory, a resource for exploring innovative housing solutions and connecting with others who share similar goals.
- Going on site visits in potential neighborhoods or meeting with various service providers.
- Participating in forums and workshops like those offered by the First Place Global Leadership Institute and its symposia.
Starting a discussion about this major transition is important, whether planning for the immediate future or the next 10 years. To identify and document housing goals and needs, you can make a vision board or slide deck or write a social story illustrating the most important aspects of your loved one’s home, support and community connections. This may change over time, but the exercise will give you a general direction towards a destination.
Understanding Financial Paths for Securing Housing
Whether planning to rent or own a future home, thinking about who and how one is going to pay for housing often depends on if the family has additional resources. Special needs planners can assist with financial and legal planning to meet lifelong needs. The free resource The Arc’s Center for Future Planning can help you start.
For families who would like to purchase a home for their loved one, the Family Opportunity Mortgage may be a tool to explore. Many states also offer home buyer assistance programs targeting people with disabilities. Contact your state Housing and Finance Agency to inquire about these programs.
For those who will be renting, thinking about who may inquire about, sign and be approved for a lease is important. A study conducted by the U.S. Administration on Housing and Urban Development (HUD) indicates that people with disabilities face discrimination in up to 50% of rental inquiries. For properties like First Place–Phoenix that welcome adults with autism and/or DD as tenants, this risk dissipates. Learn about your rights and view the study on the HUD landing page for people with disabilities.
In the U.S., housing affordability is achieved through a combination of government programs, subsidies and policies designed to reduce housing costs for low-income persons and families. For those needing assistance to afford rent, check with your local Public Housing Authority to identify if you can get on a waiting list to access a housing choice voucher, especially inquiring if disability-specific mainstream or non-elderly disabled vouchers are available. Public Housing Authorities may also be able to advise if subsidized housing units are available.
Resources for housing assistance are extremely limited and most often do not target adults with autism and/or DD. Other sources, including Autism Housing Network mentioned earlier in this guide, may be available to help offset costs through public benefits.
More advocacy is needed in this space and The Daniel Jordan Fiddle Foundation Fellowship at the First Place Global Leadership Institute is funding research to assist advocates across the country.
Finding the Right Housing Community
Consider location, accessibility and property features.
Once you have a clear understanding of the individual’s needs, preferences and financial guideposts, it’s time to refine your housing search. Some key considerations:
- Location: Consider factors such as preferred living environment (urban, suburban or rural) and proximity to family, friends and support networks. Evaluate the safety and accessibility of the neighborhood. Determine preferred walkability to community resources. Housing market analyses conducted by First Place AZ in multiple metropolitan areas across the U.S. underscore that lack of transportation is one of the biggest barriers to community engagement and causes of loneliness.
- Community resources: Assess the availability of desired community resources, such as healthcare facilities, recreational options, grocery stores and social activities. Some neuro-inclusive planned or mixed-use communities like First Place–Phoenix may have additional, beneficial supportive amenities.
- Transportation and service providers: Consider the transportation needs of both the resident and their preferred service-providing agency. For example, if you connect with a great service provider and prefer agency-based rotational staffing as your service delivery model, it is important that they are able to identify and manage direct support staff at the home of your choice.
The goal is to foster an environment where adults with autism and/or DD have the supports they need to thrive, feel safe and achieve their potential.
Integrating Support Services and Daily Living Assistance
Preparing for independence, coordinating onsite or offsite support and leveraging technology.
One of the most critical components of a successful housing arrangement is the integration of support services. Coordination of assistance in daily living, both in the home and in the greater community, requires careful planning and consideration of various types of support systems:
- Individualized support services: These include paid staff who would help an individual with daily living if family caregivers were no longer present. These supports are driven by a personalized support plan that caters to the individual’s unique needs, preferred service delivery model and level of support. They can be funded through Medicaid waiver programs or through private pay options.
- Supportive amenities: Available at neuro-inclusive planned or mixed-use communities like First Place–Phoenix, supportive amenities include planned social events and activities, life skill classes, a front desk or concierge, other on-site support staff or resident assistants. They are provided to enhance residents’ quality of life, promote independence and foster a sense of community.
- Leveraging technology: From smart-home devices that assist with daily tasks to remote support that facilitate problem-solving and self-direction, technology can make a substantial difference in a person’s ability to live independently. For example, smart-home systems can provide a sense of independence and safety by automating routine tasks such as locking doors, daily prompting or reminders, and/or managing stove activity. Apps and devices designed for individuals with autism and/or DD can also help with video modeling, organizing communication and time management, and making daily life more manageable and less stressful.
- Natural supports: These include unpaid, personal relationships and community connections that play a crucial role in fostering a sense of belonging, promoting social inclusion and providing emotional and practical assistance. Extended family members, friends, neighbors, coworkers and community organizations should also be considered. Natural supports are powerful protections against predatory relationships.
At times, service providers or neuro-inclusive housing options have connections to research institutions. These collaborations strengthen resident support, assist in training the next generation of direct support professionals and advance the development of evidence-based practices. First Place–Phoenix residents further benefit from its collaborations with esteemed organizations like Southwest Autism Research & Resource Center (SARRC) and Creighton University Medical School. These partnerships have enabled First Place–Phoenix to leverage cutting-edge research and best practices, ensuring every individual receives the highest quality of care and support. By integrating the latest research and evidence-based practices into their programs, they continuously strive to improve the quality of life for adults with autism and/or DD.
Transition and Move-In Checklist
This exciting life decision can also be overwhelming. Taking the time to pack, unpack and transition to full-time living outside of the family home does not need to happen all at once and should not be rushed. The goal is to find a balance of “leaving the nest” jitters and maladaptive anxiety. First Place AZ has one of the premiere post-secondary residential transition programs in the country with a wealth of experience in helping adults with autism and/or DD transition successfully into independent or supported living environments.
Here are a few key elements to remember:
- One month before moving: Consider writing a social story, walking the property and/or describing how the day may go. Include and confirm all moving details: transportation, additional helpers, expectations for unpacking boxes, needed flexibility and what to do in an emergency when living alone. It is important to discuss whether one wants to sleep alone the first night or have a sleepover with a friend or family member (even if not yet fully unpacked); or whether they may want to unpack over time and sleep over once this is completed. If the plan is to stay the first night, pack a single bag with essential items for the first few days, such as toiletries, medications and important documents. Review the support plan to ensure direct support professionals are on the same page, with the correct address(es) and start date(s) immediately after the move.
- Moving day: Stay organized and show progress by following a checklist. Try to limit the pressure of finishing everything in one day. Unpack essential items first and let the resident direct setting up the living space unless they request assistance. Put up any essential visual tools, unpack comfort items, and have familiar food and drinks available. Make sure the phone charger is available and the phone is charged.
- After the move: Activate additional needed supports to assist with the transition and ensure the individual feels supported in their new environment. Allow check-ins to be self-directed as much as possible, ask before offering assistance cleaning up, checking meds, or doing dishes or laundry. Evaluate processes and tools implemented for modifications. Encourage the individual to introduce themselves to neighbors. Consider role-playing prior to engaging new neighbors. Make sure the resident has a clear understanding of neighborly boundaries. Celebrate their one-week and one-month move-in dates: It’s a big accomplishment!
Maintaining Stability and Long-Term Success
For adults with autism and/or DD, this requires a combination of structured support, community engagement and confidence in their independent living skills. Life circumstances, routines and interests may change. Regular check-ins are important in these three areas:
- Evaluate one’s support network. Is the resident getting the needed emotional support, practical assistance, healthcare management and guidance in navigating daily challenges? Regular check-ins and open communication within this network ensure that any emerging issues are promptly addressed, thereby preventing potential disruptions turning into actual disasters.
- Check in on social satisfaction. The focus shouldn’t always be on making sure one’s room is clean or keeping up with healthcare needs but instead ensuring the availability of outlets that make people smile and laugh. Does the resident participate as much as desired in local activities, clubs and events? Do they have a friend or social circle with meaningful relationships and a sense of belonging?
- Support and celebrate individual growth. Adulting is hard! Building confidence and individual pride is essential for long-term success. Providing ongoing education and training in areas the resident desires—such as daily living skills, financial management and self-advocacy—empowers adults with autism and/or DD to manage their lives more independently.
One’s home is integral to life satisfaction. There may come a time for a needed shift, which may include a change in level of support, feelings of isolation or loneliness due to different location of natural supports—or maybe just a desire for a different living environment. First Place–Phoenix does not assume residents will stay in the apartment community over their lifespan—but that it may be simply their “first place.” on their own. Any changes needed should not be seen as failure but more as refinement.
Conclusion
With careful preparation and the right supports, adults with autism and/or DD can thrive in their own home. Families of neurodiverse individuals can make informed decisions about the most suitable housing options by clarifying needs, conducting financial planning, understanding support systems and finding the right community. By leveraging the expertise of organizations like First Place AZ and SARRC, and utilizing valuable resources such as the A Place in the World report, we can create a supportive and enriching environment that promotes independence, dignity and a sense of belonging for individuals with autism and/or DD.
We encourage you to reach out for a one-on-one discussion, explore other offerings and share this resource with others who may be on the same path. Together, we can create inclusive and supportive environments where individuals with autism and/or DD can find their place in the world.
