Community Living

By Stephan Stacey
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An Introduction to community living:
The term community living encompasses a spectrum of living situations that vary in form and function based upon an individuals support needs and the severity of his/her disability.
Community living can be seen in three broad categories:
1. Independent living
2. Assisted living
3. Eldercare
Independent living is exemplified by an individual living independently in his/her own residence who is largely self-sufficient (perhaps with the aid of adaptive technology or a living space that pays special attention to the principles of universal design).

Assisted living in contrast might take the form of community based residences (individual or group), often run by provider agencies that offer supervision and assistance to residents (helping with daily living skills and activities, medical issues, and transportation, etc.).

In recent years the trend in the United States has been a push toward Independent Living and away from the assisted living model ( the era of "group homes" and agency residential programs and facilities)that dominated for many years in this country.

Eldercare can be described as care for people (often with a disability), usually seniors that are unable to continue to live independently, but do not require the intensive 24-hour care of the typical nursing home.



Community living is a concept born out of the American independent living social movement (see the history section below for details), which asserts that individuals with disabilities have the same rights and choices of how and where they live their lives as those without disabilities.

The Primary goals in relation to community living for individuals with disabilities are:
1. Maximized independence in all facets of daily life
2. A focus on self-determination

Often these three core principles drive the residential portions of transition planning that is done with special education students as part of their IEP/treatment plans.

Like all the needs of special education students, the appropriate form of community living must be determined for each student based upon that student’s specific needs, and his/her own wishes and desires.

Historical Perspective:

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Movements to secure greater rights for individuals with disabilities go back to the mid-Nineteenth century in America.

Activists and supporters of the hearing impaired formed local organizations as far back as the 1850's. Eventually these local groups organized at the National level by merging to become the National Association for the Deaf in 1880.

In the 1930's groups like The League of the Physically Handicapped protested against what they they believed to be discrimination on the part of the federal government towards people with disabilities applying for federal programs.

However it was the protest movements of the 1960s and 1970s (particularly the Civil Rights movement) that gave momentum to the independent living movement. This movement focused on identifying and eliminating societal barriers to community living, educating the community on the needs and plight of people with disabilities, and lobbying policy makers to take more pro-disabled action.

One of the best known examples of this activist work was that done by Ed Roberts, a student with a disability at the University of California in the early 1960s. At that time students with disabilities had to live in the Student Infirmary which was part of Cowell Hospital ( run by the California Department of Rehabilitation). Roberts and the other students with disabilities that had to live here (twelve by 1967) saw themselves as a segregated minority. Calling themselves the "Rolling Quads". they formed the Physically Disabled Students Program (PDSP) and worked to obtain assistance services, wheelchair repair, and state/federal financial and rehabilitation services for other students with disabilities. The core idea of their work was that the true experts on disabilities are those with disabilities and that community integration was a necessity.

By 1971 the PDSP had grown to provide services to individuals outside the campus, work with community residents in need of services, and by securing a grant from the Federal Rehabilitation Services Administration established the first Independent Living Center (Zukas, 1975).Today there are close to 500 such Independent Living Centers in the United States working to foster community living for individuals with disabilities. Many of them are federally or state supported.

Here is a video on the Independent Living Centers and their founder Ed Roberts:

From their beginnings to today these centers have always given people with disabilities key roles in determining their policies and directing their activities and services, and their philosophy of inclusion, community living and person centered planning has has become the expectation.


Today, Special Education through transition planning often focuses on community living as a goal and on preparing an individual to have the skills needed to do so successfully.

Perspectives on the limitations of “facility-based” community living:

Traditionally in the United States community living programs have been structured as “facility-based” systems for serving people with disabilities. In this model the physical facility has formed the nucleus of such services, and the treatment methods, staffing, and function of said programs are all determined and limited by the desire to adhere to this focus on facility, and the tendency to link support services to the site itself. While this model was certainly a giant step in the right direction from the institutions and state hospitals of the past, the model is starting to show signs of aging today given the ever-increasing focus on individualized planning and the move to using the principles of LRE as the new ruler for community living standards.

According to The Center on Human Policy such “facility-based” programs tend to have the following characteristics/issues :
· Agency owned facility: The service agency owns/rents the residential site. This fact, if spoken or not defines the atmosphere of the setting and often the attitudes of the service providers, staff and the individual being housed and served.

· Funding is tied to facility: The agency budgets funds for the facility, and if the individual being served moves the funding does not follow.

· Facilities ruled by licensing: Licensing limits both provider and client choice, restricts the form and function of services, and requires that many important decisions be made by individuals that do not live nor work there.

· Limitations/issues regarding staff: Staff are accountable to and payed by the service agency not those being served. In this kind of arrangement frequency and types of contact and types of support are not directed by the desires of the individual client as much as by the rules and structure set forth by the agency.

The “facility-based” model in a sense (intentionally or not becomes) a sort inflexible entity that expects the person being offered services to conform or mold themselves to the program, rather than the program being designed to adapt to those being served on an individual basis. Any attempt to provide individualized services is always ultimately governed by the agency’s licenses, treatment model, and policies and procedures first. O’Brien(1993) saw the main flaw in this service model being that the “The person is a guest in someone's home.” This begs the question if living in someone's home, by their rules qualify as “community living”, or is it simply a more sanitized version of institutionalization?


Perspectives on “individualized” community living:
The concept of supporting individuals with disabilities in a more person-centered way that moves away from the traditional service provider as a facility model has slowly been gaining ground to becoming the norm as such trends in special education and transition planning have seeped outward. The wholesale adoptions of these principles will take time however, as it demands major fundamental structural and philosophical changes to the field of “residential services” and the typical operating model of agencies.

Again, the CHP identifies three key areas that will need to be addressed:

· Embracing the concept of “One’s own home”: The emphasis needs to shift from the concept of housing people (group homes and agency residences) to understanding the power and value of a person with a disability living in their own home, a home in which they make the decisions, have independence and feel secure. This is a vital component to true community living. As to the role of residential programs in this shift: support agencies that want to continue to focus on the residential piece of a person’s services will need to move toward restructuring themselves so that they lease or allow residents to co-own properties with them in a partnership-type relationship instead of being the “landlords” that call all the shots.

· Individualize planning, funding and services: Service providers must move away from the model in which the form and function of the residence and the services provided in their programs are made prior to knowing who will live in a residence and what that person’s individual desires and needs are. A resident should be involved in deciding on the size; location, and type of housing, his/her specific needs should dictate any staffing and program structure, and as a result funding should be tied to the needs of that specific individual.

· Services must be separate from residence: It is vital that the commonly existing link between housing and support services typical of many residential service providers be severed. Service providers should not be the landlords of those receiving their services as this links all of a person’s services to their place of living, and hampers a person’s ability to take exception to either without potentially jeopardizing or adversely effecting the other.


The Future (directions & trends):

While any major overhaul of how agency-based residential community living to an individualized model is still forthcoming, it is a concept that is being embraced and set as a goal by many agencies and service providers, with small shifts being tested and embraced.

One examples of a service provider that have embraced this new model of individualized community living is:

· Options in Community Living (Wisconsin)


In their own literature Options in Community Living describes why it is important to separate housing and support:
  • ...one agency should not provide both housing and support services. While we often advise and assist clients in finding, renting, and furnishing their apartments, Options no longer becomes the leaseholder or the landlord for client apartments. We want our clients to feel both control over and responsibility for their own living spaces. We also believe that receiving Options' services should not affect where clients live; our clients have a greater choice of living situations and know that beginning, ending, or changing their relationship with us will not put them under pressure to move. This policy also frees us from the time-consuming and sometimes conflicting relationships involved in being a landlord. (Johnson, 1985)


In addition Canada has instituted a number of programs funded by their Title XIX home and community-based Medicaid waiver that implements elements of this more individualized approach to community living.

Hopefully other service provider will see these two as pioneers and implement the individualized model that they are trying to establish.


.Connection/Meaning for teachers and schools:


The seeds of changing the face of community living for people with disabilities has to start with showing the children that they have the options to live in the community as full and valued members of society, and that they are at the center of planning for it.

Schools and staff must continue to focus on the individual needs of their students and work to prepare them for fulfilling, self-directed lives as members of the community.

Special educators must facilitate the writing of and implementation of curriculum that addresses each student’s individual goals with regard to their plans for living in the community upon completion of school.

Treatment teams in conjunction with the child and his family/guardians must give due time to detailed transition planning, and make it a valued and focused goal of their meetings.

It is through this kind of unified approach by all concerned parties that the system can be changed and that small battles can be won to ensure that the prospect of true community living can be achieved.

Additional Resources:

Community Integration Policy and Practice Abstracts, Fifth Edition - This resource is a compilation of recent journal articles relevant to community integration for people with developmental disabilities and includes topics of education, employment, policy, communication, supported living, and more.

Community Living For Adults- Annotated bibliography of resource books pertaining to community living.

SCDD Online LibraryOnline Library, created by the California State Council on Developmental Disabilities offering more than 3,000 resources by subject.












References:
Johnson, T. (1985) Belonging to the community
Published by Options in Community Living, Madison, WI











O'Brien, J. (1993) Supporting Living: What's the Difference?

Zukas, H. (1975). CIL History.
Report of the State of the Art Conference,
Center for Independent Living, Berkeley, California

The Center on Human Policy (CHP)