Much of the material on this page was developed for the 2016 MA Housing Think Tank, a joint effort of Autism Housing Pathways, The Arc of Massachusetts, and Advocates for Autism of Massachusetts. Additional support was provided by Advocates, HMEA, and the Massachusetts Developmental Disabilities Council. Participants included more than 50 autistic individuals, family members, service providers, policy makers, finance professionals, developers, and designers.
- At a glance:
- Still a subjective term as it relates to autism
- There is robust research on autism-friendly design
- Preparations for the 2016 MA Housing Think Tank included crowd-sourcing consensus principles on autism housing via Facebook
- Preparations further included soliciting videos of housing models via Facebook. Those the think tank planning committee deemed consistent with the consensus principles were used to generate a list of housing models.
- At a glance:
- Only two comprehensive publications regarding supported housing for people with autism in the decade prior to the think tank:
- Opening Doors: A Discussion of Residential Options for Adults Living with Autism and Related Disorders, conducted by the Southwest Autism Research & Resource Center, the Urban Land Institute and Arizona State University concluded most successful existing models are one-offs, and outlined a series of next steps to create scalable housing options. (Links contained within this fact sheet have expired; correct links may be found below)
- Housing Options for Adults with Autism Spectrum Disorders from the Pennsylvania Department of Public Welfare Bureau of Autism Services produced a typology of seven housing models: remaining at home (although possibly in a separate unit); living with a different family; renting an apartment or home; purchasing a home; sharing housing; intentional communities; and licensed facilities.
- Studies addressing housing for people with developmental disabilities in general include:
- Disability Housing: What’s happening? What’s challenging? What’s needed? This Harvard Joint Center for Housing Studies working paper speaks to the need to balance supportive services with self-determination and community access.
- Housing and Support Options for People with Intellectual and Developmental Disabilities. This study identified promising trends in best practices, and also pointed out the challenge of scaling to meet demand.
- Collectively, the studies underscore the challenge in creating scalable models that balance the need for community integration, self-determination, and appropriate supportive services. Creative design, ownership models, and funding streams may be fruitful approaches.
- Only two comprehensive publications regarding supported housing for people with autism in the decade prior to the think tank:
- At a glance:
- There is a robust literature on autism-friendly design. We explore this in a separate page on design.
- At a glance:
- Based on videos solicited via the Facebook page, the think tank planning committee identified models deemed consistent with the consensus principles. Participants in the think tank were expected to have read the list of housing models prior to the think tank.
- Videos explaining a given model, describing a potential exemplar, or outlining ways in which supports might be provided are described on the page Housing Models. Participants were asked to consider viewing the clips to broaden their understanding of the models. Those who did not view the technology webinar slides or webinar, were asked to at least watch the video on smart homes.
What constitutes best practice?
Aside from the literature on design principles, best practice in supported housing for people with autism is currently still a subjective phrase; generally, people have extrapolated from the literature on people with developmental disabilities.
For the purposes of the think-tank, organizers crowd-sourced a set of consensus principles via the Facebook page, MA Autism Housing Think Tank. Participants on the page proposed principles. Other readers could like a principle to endorse it, or reformulate into something with which they could agree. The reformulation needed to be liked to take the place of the original. The principles are embedded below.
Once the crowd-sourced consensus principles were finalized, videos of housing models were solicited via Facebook. These were then evaluated by the think tank planning committee for compatibility with the consensus principles. Videos that passed the test were used to generate housing model descriptions. Descriptions and videos appear on the page Housing Models. Some of these housing models are currently in existence, some are in the process of being created, and some are conceptual.
Literature on best practices
There is very little specifically written about best practices in supported housing for autistic people. Two comprehensive explorations of the question of creating autism housing options have been published in the last decade. More is available on disability housing in general. Here are summaries and links to a few publications on this topic, beginning with those focused on autism.
Opening Doors: A Discussion of Residential Options for Adults Living with Autism and Related Disorders This 2009 publication by the Southwest Autism Research & Resource Center, the Urban Land Institute, and Arizona State University assessed existing successful models from around the country. It identified as next steps: conducting market surveys of demand and price-points; creating an interactive database of housing options; develop and test soft infrastructure support models; develop prototypes to test best practices and new ideas; respond to current and short-term demand; increase and systematize capital resources from public agencies; pursue testing of innovative options. Opening Doors included the design characteristics from the companion study, Advancing Full Spectrum Housing: Design for Adults with Autism Spectrum Disorders, which is explored in more depth on this website’s design page. Finally, Opening Doors referenced five strategies promulgated by Advancing Futures for Adults with Autism (AFAA):
- Engage people and institutions that direct capital and influence housing policy by presenting a clear, compelling picture of the market demand for housing for adults with autism.
- Increase collaboration and coordination between service agencies and housing agencies at the local, state and federal levels.
- Motivate the overall real estate community (including government agencies, developers and others) to create housing options that are transit-oriented and accessible to employment, shopping and recreation, as well as increase opportunities for independence and integration.
- Direct support towards residential service models which are person-centered and actively seek to meet the needs and interests of each adult with autism.
- Expand both public and private funding for residential services for adults with autism.
Housing Options for Adults with Autism Spectrum Disorders This 2010 publication of the Pennsylvania Department of Public Welfare Bureau of Autism Services produced a typology of seven housing models: remaining at home (although possibly in a separate unit); living with a different family; renting an apartment or home; purchasing a home; sharing housing; intentional communities; and licensed facilities. The criteria used to select these models were: Affordability; flexibility to meet the range of needs of autistic people as they change over time; attractiveness to the people living there (a function of factors including location, design, cost, services, other residents); utilization of existing housing options; utilization of available community resources; ease of replication and administration. For each type, several models are identified. Many of the funding streams referenced are specific to Pennsylvania. Another drawback to this report is that it was produced prior to the CMS final rule on what constitutes Home and Community Based Services (HCBS), so a number of the projects described under intentional communities would not be permitted under the DDS policy that elucidates HCBS compliance in Massachusetts. However, together with Opening Doors, this is one of the two most exhaustive examinations of autism housing (as opposed to developmental disability housing in general), and contains a broad range of valuable information.
Disability Housing: What’s happening? What’s challenging? What’s needed? Micaela Connery’s 2016 working paper from the Harvard Joint Center for Housing Studies divides the history of disability services into three major epochs: a Kennedy-era focus on the need for adequate care (termed care); the movement toward self-determination and independent living (termed choice); an ADA-era focus on the need for full access and opportunity (termed access). She suggests there remains a tension between these sometimes conflicting values. In developing housing, Connery states, funding must always be available for housing development, housing operations, support services, and medical care. She goes on to identify the following needs: engaging parents and families as advocates and as a potential funding source for public-private housing options; creating a funding and regulatory environment that supports staff; supporting personal choice and individualized supports; and encouraging innovation. Policy and strategy considerations are elucidated: linking disability and other housing needs; engaging millennials as potential neighbors, roommates, and service providers; making direct service a professional career; and understanding disability as individuals age.
Housing and Support Options for People with Intellectual and Developmental Disabilities This 2014 study of housing options, which involved interviews with leaders from around the country and visits to providers in Wisconsin, Michigan and Oregon, was funded by the Coleman Foundation. Its purpose was to inform decision makers in Illinois, and therefore some of the options referred to are not relevant in Massachusetts. The study found several trends:
- Person-centered planning
- Individualized budgets
- Property owned by entities other than service providers
- Independent support brokers
- Flexible Medicaid waivers with a menu of options
- An awareness that many “best practices” are, so far, difficult to scale up
The authors present a grid for planning purposes on page 17; bear in mind that the “ICF/IID” is not an option in Massachusetts, and that the State Operated Housing referred to is not the same as a state-owned and operated group home, but a full-blown state institution, and is not relevant in Massachusetts.
What all of these works make clear is that the challenge of balancing choice, supportive services, community access, affordability, and scalability is daunting. Design may be one way to break the log-jam, as part of the problem may be a tendency to limit solutions to existing housing forms. Fortunately, American society as a whole is beginning to wrestle with these limitations as they affect other groups, such as aging parents and millennials who cannot afford housing. Solutions for autistics may well prove beneficial to other populations as well. Additional strategies may be innovative forms of lending and property ownership, which could lower the cost threshold for families and individuals. Finally, it is important to find ways to accommodate the needs and desires of some individuals for quiet, predictable spaces and lifestyles while still achieving community integration, as stipulated by the Centers for Medicare and Medicaid Services. (A variation on this challenge is preserving access to community amenities, even when clinical issues present a barrier.)
For the purposes of the September 10th think-tank, we crowd-sourced a set of consensus principles via the Facebook page, MA Autism Housing Think Tank. Participants on the page proposed principles. Other readers could like a principle to endorse it, or reformulate into something with which they could agree. The reformulation needed to be liked to take the place of the original.
Note the language of the principles is not intended to depart from “People first” concepts and philosophy. The think tank organizers believe children and adults with autism should be accepted as community members first. Some people wish the identity of “autism first.” Language is varied to reflect this variation.
- Autistics require a spectrum of adult living arrangements and supports.
- Adult living arrangements for autistics should not be conditional on their being able to participate in specific types of day programs or “employment.”
- Placement in a residential setting (for those who are eligible) should be based on an individual’s vision as developed using Person-Centered Planning processes; not based on the next available “bed.”
- Adults with autism need living arrangements where they can stay in their home when the support provider changes.
- Autistic adults need to be given the opportunity to make choices about how to spend their leisure time; the food that they eat; and more. The state should provide sufficient oversight and control over agencies running 24/7 group homes to ensure clients have meaningful control over the decisions that affect their daily lives.
- Adults with autism have the right to change their housing situation and/or provider agency and seek/receive help from the state government, if where they live; with whom they live; or the provider agency makes them feel uncomfortable or unwelcome.
- Adults with autism have the right to have their parents act (or to select a representative, professional or otherwise, to act) as their advocates, to be their voice in achieving a high quality of life when the autistic adults live in an adult services residential setting.
- The individual’s designated advocate (family or otherwise) or legal representative (guardian, conservator, designees to assist in supported decision making, etc.) can be present at any meetings, provider or otherwise to plan or make decisions in regard to services.
- Direct support staff who work in adult services residential settings need to have much more comprehensive, extensive, mandatory training in evidence-based practices. Training should be relevant to the individuals with whom they will work, based on a person-centered planning process, and should take place prior to working with individuals.
- Direct Care staff need background checks, fingerprinting and other protective procedures such as a registry which would identify individuals with substantiated abuse or neglect reports.
- Adult living arrangements for autistic adults should help them live the best life possible.
- People with autism need housing that is designed and constructed to encourage growth and independence, minimize environmental triggers that cause decompensation, facilitate support needs, and reduce friction with housemates, neighbors, and landlords. Because home is where you should feel comfortable in your own skin.
- Adults with autism should be supported in integrated settings with other adults who are not autistic with the appropriate supports to do so. It is understood that some individuals may require other individually designed settings based on the person centered plan.
- Those people with autism who are not safe outdoors on their own should have housing with a backyard and safety measures as deemed necessary to support the individual, so they can safely spend time outdoors.
- Autistic adults need their living situations to provide 1.) ample options for solitude to decompress and recover from social situations, as well as 2.) the ability to regularly schedule periods of unavailability.
- Autistic adults have a right to housing they can afford.
- Autistic adults have a right to access public transportation regardless of where they live.
- Autistic adults need housing options that are scalable, either by virtue of being affordable to families, attractive to a larger market, or readily incorporated into new, multifamily developments serving the broader community.
- Adults with autism have a right to housing that allows them interact with animals and the natural world, including the ability to own pets and garden.
- Autistic adults have a right to live in rural areas, engage in gardening, and work with animals, provided their living arrangements are separate from the location of their activities during the work day.
- Families should be able to network openly with each other for the purpose of establishing housing opportunities.
- Autistic adults with complex medical conditions, including those that may occasionally present as maladaptive behaviors, need housing where medical conditions and required care, along with dietary restrictions, are prioritized in the care provided at the house. Dietary considerations and medical management may require additional qualifications and training for staff, but are critical to maintaining long term wellness, reducing maladaptive behaviors, and persuading families it is safe to access housing supports.
Twelve of the models that were reviewed by the think tank planning committee were deemed consistent with the consensus housing principles for people with autism. Think tank participants were expected to have read the list of models prior to the think tank. They were also asked to consider watching video clips (available on the page Housing Models) to broaden their understanding of the models. During the think tank, participants evaluated these models as options for a broad range of hypothetical people with autism (profiles were based on, or were composites of, real individuals). For those models deemed most promising for an individual profile, participants identified possible design and technological features that could improve success, while also identifying barriers to implementation, and suggesting potential funding streams. Participants also had the opportunity to suggest additional models. Model descriptions, including video examples, appear on the next page of this website.