Leaving the Family Home: Opportunities and Obstacles for Autistic Adults

When we think about the future of individuals on the autism spectrum, it is easy to feel overwhelmed. Who will help them create their weekly schedule? Where will they work? How will they connect with friends? Who will assume the daily support role once parents can no longer provide care?

Developing a Person-Centered Plan (PCP), which is the adult version of an IEP, helps create structure while shaping an individual’s future around his or her life goals, support accommodations, and meaningful relationships. Yet, without access to affordable housing in one’s community, all of these plans can be thwarted when the only option available is the “next empty bed.”

Support Funding for Adults on the Spectrum

In the past, individuals with autism were institutionalized in order to receive supports. It wasn’t until 1980 that the U.S. created a funding mechanism to “waive” the need for institutionalization. The Home and Community-Based waiver is now the primary public funding source that allows autistic adults to access supports in a home of their choice. These supports vary by state and may include hours of direct support staff assistance, assistive technology, access to a number of therapies, supported employment or day program opportunities, etc.

While waivers are a fundamental step forward, most states have long waiting lists, and eligibility standards can prevent individuals on the spectrum from qualifying for benefits. Contact your state Developmental Disability Agency to learn about what waivers are available in your state, to check eligibility requirements, and to get on the wait list: http://www.nasddds.org/state-agencies/.

Overview of Current Housing and Support Models

Once an individual has access to a supports, whether through a waiver or private pay, the next step is finding a home. It is important to understand the distinctions between the various housing models:

 

  1. Consumer-owned or Controlled: Any home that an individual owns or leases. Scheduling and choosing service providers is individualized. The individual can easily change providers and select roommates.
  2. Provider-owned or Controlled: Typically called a group home, a service provider maintains a setting where multiple individuals with disabilities live. The provider manages the support staff and offers scheduled outings and activities. If an individual decides he or she would like to switch providers, the individual must move.
  3. Family Host Home (Adult Foster Care): A neurotypical individual or family invites a person with autism to live in their home and offers natural supports as part of their family. The state offers a stipend to the family host. If the family decides they can no longer provide these natural supports, the individual must move.
  4. Shared Living: An individual on the spectrum chooses to share his or her home with a neurotypical roommate or family. The chosen roommates may (or may not) pay rent and could even receive a stipend as a host family. The roommates, rather than the individual with autism, would have to move if the support relationship changes.
  5. Campus Setting/Farmstead: These settings can be either provider-owned/controlled or consumer owned/controlled and are communities within the greater community. Individuals who live there may have pedestrian access to day activities or employment options on the same property as their home. Individuals should have access to their greater community to work, recreate, or volunteer as desired.

With limited access to waiver supports, the National Autism Indicators Report shows that only 19% of young adults on the autism spectrum have ever lived independently after high school (Roux, Shattuck, Rast, Rava, & Anderson, 2015). For an in-depth discussion of the benefits and considerations of the array of home options, please see the video presentations on the Autism Housing Network (www.autismhousingnetwork.org).

Systemic Issues

Thirty-five years of data collection tell us that we are in the midst of a housing crisis. Baby boomer parents are reaching the age when they can no longer support their loved one on the spectrum, and, as the image below depicts, access to residential supports for those with I/DD is glaringly insufficient.

 

 

 

The challenges are not limited to the scarcity of publicly funded supports. Direct support staff is one of the cornerstones of quality of life for adults with autism, and yet, turnover in the direct support industry is extremely high. With a median income of less than $21,000 annually (Bureau of Labor Statistics, 2015), many qualified individuals simply cannot afford to work in this field. Adequate compensation is imperative to developing and maintaining a stable, high-caliber workforce.

Additionally, the prevalence of abuse is staggering. According to the Disability & Abuse Project, 67% of individuals on the autism spectrum are victims of financial, emotional, or sexual abuse (Baladerian, Coleman, Stream, 2012). Twenty-five percent are socially isolated, meaning they never saw or spoke with friends or were invited to a social activity in the past year (Roux et al., 2015). According to the 2014 National Core Indicator study, 40% of individuals with I/DD report “sometimes” or “often” feeling lonely. An individual could live in the most luxurious penthouse overlooking Central Park, but if that individual is being abused or suffering from social isolation, the beautiful home does not matter.

The final challenge is securing affordable housing in a fluctuating rental market. Fifty-eight percent of young adults on the spectrum are employed at an average rate of about $9 per hour (Roux et al., 2015). According to the National Low Income Housing Coalition, the average autistic adult must work 68 hours per week to afford a one-bedroom apartment without spending more than 30% of his or her income on rent (2015). Therefore, access to subsidized rent through housing choice vouchers or low-income housing units is essential for most individuals on the autism spectrum. Unfortunately, there are wait lists. Contact your local public housing authority to understand affordable housing options in your area and/or to join a wait list (even if you do not plan to move for another five years): http://portal.hud.gov.

Creating a Better Future

With the lack of support services and affordable housing options, increased reports of loneliness and isolation, and high rates of abuse, individuals on the spectrum and parents are developing local solutions. I have sat at dinner tables and worked side-by-side with hundreds of citizens nationally whose communities are embracing the challenge of creating a better future for adults on the autism spectrum.

Some of the emerging models include:

 

  • Post-secondary Transitional Programs: A temporary residential program that aims to teach the life skills needed to live independently after 2-5 years of program participation.
  • Micro Homes/Accessory Dwellings: A smaller home on the property of one’s family home that provides privacy with a natural support system nearby. The family home could be leased in the future as a source of income for the individual on the spectrum and to maintain an immediate support system.
  • Neurodiverse Cohousing: A neighborhood or intentional community built from the ground up by whomever decides to be part of the development (i.e., neurotypical couples, families with a special needs child, a couple on the autism spectrum, etc.). Each home is owned or rented by residents. A common house hosts community dinners as desired, has amenities chosen by the residents, and is the meeting place for planned, voluntary neighborhood activities.
  • Multi-family, Neurodiverse Supportive Housing: An apartment building or neighborhood where housing is designed with the support needs of individuals on the spectrum in mind. These housing developments are consumer-owned and controlled. They often use assistive technology, attract neurotypical residents who want to provide natural supports, and/or have an on-site staff included in rent to assist with immediate needs or challenges. This neurodiverse housing model provides amenities and neighborly support for those who may not qualify for a waiver.

The Autism Housing Network

In 2009, the first comprehensive report on the autism housing crisis, Opening Doors: A Discussion of Residential Options for Adults Living with Autism and Related Disorders, was produced by Southwest Autism Research & Resource Center (SAARC) and Urban Land Institute (ULI) Arizona. One of the recommendations of the study was to create an interactive housing database. After years of research, Madison House Autism Foundation is launching the Autism Housing Network (www.autismhousingnetwork.org) in April, 2016. Denise D. Resnik, the co-founder of SAARC and editor of the study recently stated that the Autism Housing Network “has extraordinary potential to share successes and be a catalyst for advocates and parents eager to work together on solutions.”

A Next Step Checklist

Even if creating a local housing opportunity is not your immediate priority, here is a checklist of essential next steps that you can begin working on to ensure you or your loved one on the spectrum has an array of housing choices:

 

  1. Begin assembling your team, and set a date to develop a person-centered plan with the individual on the spectrum leading this process as much as possible.
  2. Review and shape one’s IEP for acquiring life skills such as cooking, taking public transportation, exploring assistive technology, functional math, etc.
  3. Apply for waiver funding and/or affordable housing.
  4. Meet with a special needs lawyer and financial planner to write a Letter of Intent in case a sudden life event occurs, and begin financial planning for housing goals.
  5. Intentionally foster relationships with those who may be a future accountability system and friendship circle.
  6. Be an advocate when you see calls to action for affordable housing funding or vouchers, ABLE accounts, SNAP or nutritional assistance, HCBS waiver funding, etc.

Please join me on the Autism Housing Network by visiting www.autismhousingnetwork.org. Together, we can create a better future for autistic adults.

 

For more information, please email info@madisonhouseautism.org or call 240-246-7140.

References

Baladerian, Nora J.; Coleman, Thomas F.; Stream, Jim (2013) A Report on the 2012 National Survey on Abuse of People with Disabilities Spectrum Institute Disability and Abuse Project, Spectrum Institute Disability and Abuse Project. Retrieved on March 3, 2016: http://disability-abuse.com/survey/survey-report.pdf

Bureau of Labor Statistics (2015) Occupational Outlook Handbook,, 2016-17 Edition, Personal Care Aides, U.S. Department of Labor. Retrieved on March 3, 2016: http://www.bls.gov/ooh/personal-care-and-service/personal-care-aides.htm

National Core Indicators (2014) National Core Indicators Chart Generator. National Association of State Directors of Developmental Disabilities Services and Human Services Research Institute. Retrieved on March 3, 2016: http://www.nationalcoreindicators.org/charts/?i=107

National Low Income Housing Coalition (2015) Out of Reach 2015 Facts Overview. Retrieved on March 3, 2016: http://nlihc.org/sites/default/files/oor/OOR2015_Factsheet.pdf

Resnik, Denise D.; Blackbourn, Joe; Bosworth Jr., George R.(2009) Opening Doors: A Discussion of Residential Options for Adults Living with Autism and Related Disorders. Urban Land Institute (ULI), Southwest Autism Research & Resource Center (SARRC), Arizona Board of Regents for and on behalf of Arizona State University. Retrieved on March 3, 2016: http://www.autismcenter.org/sites/default/files/files/openingdoors_print_042610_001.pdf

Roux, Anne M., Shattuck, Paul T., Rast, Jessica E., Rava, Julianna A., and Anderson, Kristy, A. (2015) National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University

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