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How to begin to design, build or renovate a real home for your loved one with autism

Many factors come into consideration at this point.  Just to name a few:

  • Does my loved one want to live alone with appropriate staff supports?
  • Should we plan for roommates and if so, how many roommates?
  • What is the right blend of housemates behavior-wise?
  • What is the optimal staff support ratio to the number of housemates?
  • What housing design, features and adaptations is best for my loved one?
  • Where should it be located?
  • How much will this cost me?
  • What if I cannot afford these costs?

If you feel that your loved one with ASD wants to live with one or more roommates, it is best to get to know other families in your local area who are interested in these same issues.  Getting to know interested and like-minded families personally over time, who have a member with a disability is a very helpful part of this process, since this helps the decisions about roommates unfold naturally. It may be feasible for you and other families to join together to form cooperative housing.  There are any number of community living options that currently exist, or that may be constructed that are suitable settings to form coops in.  It may or may not be a good thing for people with autism to seek roommates who also have autism.  The more important issues involve creating the right blend of roommates so everyone feels comfortable and at ease, and also, making sure that support staff are well trained to know how to work appropriately with people with ASD.

If you cannot afford to go it alone, joining together with people you know and get along well with is one way to go.  If you pool your resources, a group of like-minded families can afford to hire a qualified disabilities housing consultant such as George Braddock or others, to fly in to your location, to provide coaching and training to your group on how to make decisions about building cooperative housing or even building or renovating your own adapted environment. Click on www.myarchway.ning.com to connect to like minded families in many states and cities across the U.S.

Values must guide the work

As George Braddock so aptly expresses: people with disabilities are not broken and therefore do not need “fixed”. Rather, they are to be valued and loved, and it is the built and social environment that must be fixed, modified, adapted or structured properly so our fellow citizens with ASD can take their rightful place among us as friends, neighbors, co-workers and employers.  They should be able to establish real homes, make personal choices, and be included in everyday life with typical citizens in our community to the greatest extent possible.

The values expressed in the new disability paradigm must be active in every project and the degree to which they are achieved becomes the measure of success.

  • Independent living Skills, Services and Supporters
  • Full Participation  Empowerment, Self-determination and Informed Choice
  • Equality of Opportunity Individualization, Inclusion, Meaningful Opportunities
  • Economic Self-Sufficiency Training, Education, Employment Assistance and Supports

Systematic and inclusive process

Person-centered planning is key to the creation of a more complete housing fabric. Housing for individuals with ASD is needed as part of the larger housing stock, created as much as possible within the existing building culture. Though this housing must be seen as a part of regular housing options, it is not necessarily the same as what is commonly available. The question needs to be: Does this housing make sense? Does it work? Is it affordable, accessible and integrated? Is it safe? What would an ideal home neighborhood and assistance look like? How do we get the ideal?

People First

The planning process must be inclusive and systematic; it must involve the family and the person whenever possible and other people who have a long-term interest in the outcome. The future plan must be translated into tangible goals so the ideas can become real and feasible. Those charged with making the project happen must adhere to the goals in developing the home. Person centered planning is critical if individual choice is to be realized.

Real Choice

By building housing that by design will allow people with ASD to live their lives more fully, the fabric of housing choices will become more complete. This allows other individuals at a future time with similar needs to find a home in the community that works and makes sense for them. It is also possible to incorporate Universal Design elements in your home design planning, so that people are able to age in place.  However, over the course of an adult lifespan, people’s circumstances, tastes and needs change. Housing must be available so that they may move on when they need or want to.

More Than Just a House - A Place in the Community

If inclusion of persons with ASD in the larger community is good, than a commitment to the creation of available housing stock, that meets their needs, is necessary. Experience has shown the people with ASD are more likely to find opportunity and acceptance in older, established neighborhoods with a mix of age groups, lifestyles and economic circumstances. These neighborhoods provide public places for being seen and for meeting, such as parks, corner stores, sidewalks and pedestrian-friendly streets, giving neighbors an opportunity to encounter and interact with one another. This can lead to breaking down the common stereotypes of people with ASD, opening the possibility for friendship and a place in the community.

The Law is on our Side

Active opposition and un-welcomeness is a reality in some neighborhoods. Some of the barriers erected, to exclude diversity, include land use laws, zoning restrictions, neighborhood associations, CC & R’s and architectural review panels. Effort must be made to dispel the old stereotypes that engender fear and resistance to inclusion. Paying attention to neighborhood patterns and finding ways of fitting in can contribute substantially to a positive perception of persons with ASD and to a sense that they too can belong.

People are very adaptable and can usually get by but they may not always thrive. A decision to move a person into housing that from the beginning fails to support their lifestyles under the guise of defending their right to live in conventional housing ignores both the real immediate costs and hidden costs. These lost opportunities for people with ASD to thrive wastes time, money and finite resources.

For the Good of the Cause

The goal must be to create real homes in active and accepting communities.

  • Values must guide the work.
  • Planning is person-centered.
  • Keep homes small. Most people do not want to live in group homes.
  • Commit to quality and to permanence in housing.
  • Recognize the active role of the physical environment in shifting the balance away from barriers and restrictions toward more individual choice, control and independence.
  • Chose locations that provide necessary supports and neighborhoods that provide meaningful opportunities for people to fully participate in the community.

To be successful, the person-centered environment must:

  • Meet essential requirements of health and safety.
  • Respond to individual needs and lifestyle.
  • Be a real home.
  • Be a part of the neighborhood and connected to the larger community.
  • Be a desirable place to live for the foreseeable future.

Values that put people first are key to creating successful living environments.  Ultimately, it is the people – the individual, family, supports, caseworkers and neighbors – who are primary in creating an inclusive culture. National research indicates that success outside of nursing homes is achievable for most seniors and individuals with disabilities and that the physical environment plays a central role in shifting the balance within this culture away from obstacles and restrictions toward choice and participation. Beyond responding to the essential requirements of health and safety, a supportive environment can free a person with disabilities from institutional impediments, allowing them the freedom to live a more normal, independent life. Experience has shown that a person-centered environment designed to meet the needs of the individual not only empowers the person with disabilities but also reduces stress and workload on their supports, family and others who are part of their life.

Shifting the Balance Toward Choice, Control and Participation

The professionals, families and advocates in the disability community have traditionally focused on assuring appropriate supports, services, and programs for individuals. Until recently, little attention has been paid to the critical role of the physical environment in promoting independence and improving quality of life for the individual and increasing the success of the overall program. Ultimately, it is the people, the residents, family, supports, friends, caseworkers and neighbors, who create a real home. The physical environments, however, play a central role in shifting the balance within this culture away from obstacles and restrictions toward choice, control and participation.

For Many individuals with Disabilities, Living with their Family is no Longer an Option

For many individuals with disabilities living with their family is not realistic, but living in a real home rather than an institution is a real possibility. A concretive living configuration, with its systems, processes and procedures, regulates the activities and rhythms of life. In a home, it is the positive relationship between residents and supports within a supportive physical setting that improves the quality of life for everyone. In a real home, the activities of daily life – making meals, doing laundry, planning activities and relaxing – taking precedence over institutional protocol. In this setting, positive family-like relationships can replace the traditional client-employee paradigm. Residents live a more integrated life and supports are able to assume the appropriate support role.

See http://rtc.umn.edu/docs/pcpmanual2.pdf  This provides very good information on the comparison of a system-centered approach versus a Person-Centered approach.

Small Environments are Better, but Not a Guarantee of Success

A supportive environment can free individuals from impediments, empowering them to live an increasingly satisfying and independent life. This profound and positive shift becomes more possible in small group settings, but small size alone does not guarantee success. Layouts and amenities commonly available in conventional housing may restrict the activity of the individual. Houses which require multiple people to share a bedroom, for example, or where diets are dictated by a dietician and meals are prepared remotely, and then re-thermalized, are recreating an institution within the community. Indeed, it is possible to create an institution in a house with only one resident.

Anna’s Story

One example of how these values can translate to physical results and positive outcomes is a project recently completed by George Braddock for a young girl with autism.  Anna spent many hours each day in the bathroom in intense water play, a source of tremendous stress on her family and damaging to the physical structure of their house.

Based on an evaluation of the space, Anna’s desires and the needs of her family, a remodel plan was developed to improve the layout and technical performance of the bathroom. Grab bars, impervious materials, heated surfaces, improved lighting, durable fixtures and other elements were introduced. The evaluation of the completed project and its effect on Anna’s life shows that she can now do what she clearly enjoys without negative consequences. Safety is improved, damage to the building is minimized and her family experiences significantly less stress and more freedom because they spend less time doing intensive supervision and cleanup. Anna has exhibited a reduction in behavioral episodes because she experiences more choice, control, freedom and independence in her life. Anna’s ability to continue to live at home with her family is a substantial return on the investment in physical improvements.

Behaviors and the Active Role of the Environment

The environment should be made so that the individual can live the way they want, provided it can be done safely. In Anna’s case this meant making a bathroom where her love of water play had no negative consequences. Other activities – banging on walls, picking, slamming doors, smearing, wandering, repetitive motion, screaming or just sitting or laying – will require different environmental solutions. The ultimate goal is to better allow behaviors that are soothing for the person with ASD, providing the individual with greater dignity and choice in their behaviors.

Visibility and access to all parts of the home, including kitchens, utility rooms, the yard and beyond gives the individual greater control in their life. In all cases the environment should encourage and support the individual use of the home in a way that satisfies them and reduces or eliminates the negative consequences of a disability. 

This approach runs contrary to some other approaches that aim to completely extinguish all self-stimulatory behaviors.  As long as a person with autism has a combination of activities in their day to day schedule that enables them to continue to learn, grow and contribute, we feel that self-stimulatory behaviors have a place in that mix.  Moreover, many self-stimulatory behaviors are nearly impossible to extinguish completely, try as we might. We can and should continue to shape behaviors with such approaches as using an indoor or outdoor voice, or when and where touching or being undressed is appropriate or not, etc.

Meeting Public Expectations

Successful integration depends upon choosing locations that provide necessary supports and neighborhoods that provide meaningful opportunities for individuals to participate and contribute to their communities.  Successful housing requires a commitment to quality and to permanence in the living environment. Housing must guarantee the individual a safe and healthy place to live for the foreseeable future. The buildings must be constructed for longevity and durability to withstand heavy use over a reasonable life-cycle. Housing which does not satisfy these basic requirements, in the long run, will fail the individual and the public.

More Than Just a Home – A Place in the Community

Experience has shown that individuals are more likely to find acceptance in older established neighborhoods with a mix of age groups, lifestyles and economic circumstances. These neighborhoods provide public places for being seen and for meetings, such as parks, corner markets, sidewalks and pedestrian-friendly streets, giving neighbors an opportunity to encounter and interact with one another. This can lead to breaking down the common stereotypes of people with developmental disabilities, opening the possibility for friendship and a place in the community.

Don’t Let Technical Criteria Dominate

Homes built in new large scale housing developments usually at the edge of town are easy to develop; however, we find these locations are often less than desirable from the individual’s point of view. Social and employment options are more limited because a person needs a car. This must be factored in when establishing a plan as transportation must be provided. Streets are often lined with walls, fences and garages, making the public realm inhospitable. Everything is more uniform, making individuals with disabilities stand out. The opportunities for social encounters that can occur in more urban neighborhoods are fewer. Although it is possible to live here, meaningful participation and viable integration is much less likely.