Supported living

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Supported living or supportive living [1] refers to a range of services and community living arrangements (CLAs) designed with individuals with disabilities and their families to support citizens with disabilities to attain or retain their independence (see independent living) or interdependence in their local communities. Supported living is recorded in the history of the NASDDDS (National Association of State Directors of Developmental Disabilities Services), celebrating its 50th anniversary. Community Supported Living Arrangements (CSLA) was a landmark federal multi-state demonstration to illustrate the federal role in community living in the US. [2] [3] Supported living is considered a core service or program of community living programs funded through federal-state-local partnerships.

Contents

In the United States

Supported living has been defined in diverse ways in the US, including early conceptualization in New York as integrated apartment living, and one early definition by the state of Oregon:

"Supported living is defined as persons with disabilities living where and with whom they want, for as long as they want, with the ongoing support needed to sustain that choice." [4]

"Supported living...its simplicity is elegant. A person with a disability who requires long-term publicly funded, organized assistance, allies with an agency whose role is to arrange or provide whatever assistance is necessary for the person to live in a decent and secure home of the person's own." [5]

As a form of community living development, supported living became identified with certain approaches to services and community, including the own home initiatives. These services involved an understanding of "formal" and "informal support" (and their relationship), and changes from "group thinking" approaches (e.g., ten intermediate care facilities for 15 persons each) to planning services for, with and by the person "targeted to be served." [6] For example:

"Supportive living represents a movement within the (intellectual and) developmental disabilities field to provide support services in regular housing to adults with disabilities. Direct support services can be provided by paid staff, including live-in roommates or boarders, paid neighbors, a person hired as an attendant, a support worker or personal assistant, as well as more traditional agency and (modified) shift(live-in) staffing. Professionals, friends, families, and other "informal supports" can also assist people to live in their homes. Supported living may be joined to a movement toward decent, affordable and accessible housing." [7] [8] [9]

Supported living in the US has multiple known origins, including:

Evolution of the concept

Supported living also developed along different trend lines in the US, two of which included a broadening of the community living concepts in the new community paradigms of community membership [28] of support and empowerment [29] [30] of conversion from an institutional to a community paradigm [31] of person-centered planning [32] of community regeneration (and neighborhood assets) [33] and the service system change to housing, homes and personal assistance and supports in quality community living. [34] [35] Supportive living was an ally of independent living to assure that special population groups could also obtain the benefits of IL services and concepts.

Community participation

First, part of leadership (e.g., federal financing, state leaders, agency providers, knowledge dissemination networks) was back to the broadened concept of "community living" based on emerging concepts and practices in "community participation." [36] [37] [38] Supported living linked with the concepts of integrated recreation, inclusive education with community opportunities, community membership, self-determination, "community seeding", "person-centered", and personalized supports. [39] [40] This resulted in projects such as the Community Opportunities Project of the Louisiana Developmental Disabilities Council, which were based on roles and relationships such as: Paul becoming a church member, fiancée, health club member, good neighbor, regular at Fred's Country Western and coffee shop, and self-advocate with statewide recognition. [41]

Supportive living

Second, the concept of supportive living was broadened from a service category of a residential program (i.e., facility-based program model with bundled services) [42] [43] to bridge the gap toward the independent living concept of housing and personal assistance services (health-funded), the concept of regular homes with the availability of "intensive support services" (special population groups, "severe disabilities"), [44] a "range of community support services" (e.g., community counseling, recreation support personnel), decent community life (e.g., community employment, financial security), and principles of community and self-determination/choice. [45] [46] [47]

This agency and systems change work was based on the identification of leading practice of organizations supporting people with disabilities in the community, including the following program design components: the separation of housing and support, home ownership [48] and leasing, individualized and flexible supports, and individual choice. [49] This program design requires "service coordination/case management/service broker/support facilitator", [50] [51] "individualized funding" [52] [53] and "person-centered approaches to planning and supports". [54] [55] This framework has been used in the design of a person-centered course in community services [56] and frames the supported/ive living approach of university doctoral students to graduates. [57]

Housing and "homes of our own"

Generally, though the focus remained on making people's places into "homes of their own" [58] [59] which became a federal initiative to also explore other housing and support options on the local levels. [60] [61] [62] [63]

On the service configuration and program design levels, a multi-case study research design was used to explore the five identified characteristics of a "housing and support" approach: the separation of housing and support, "home ownership", including tenancy, close tie among assessment, individual planning and individualized funding, and flexible and individualized support services, and choice. [64] Separate developments were proceeding on personal assistance services which began with the independent living movement led by leaders such as now Honorable Judith E. Heumann and late Ed Roberts; it remains current today (E.g., Center for Personal Assistance Services in the US of San Francisco State University, California; then the Rehabilitation Research and Training Center on Center for Personal Assistance Services of the World Institute on Disability, 1990).

A state policy study in South Dakota explored the relationship of state systems change necessary to move to a full range of regular housing and support options from the current facility-based service design in comparison to modifying the current small apartment/home structures such as those in Connecticut. [65] [66] To date, there is no evidence of this type of systems transformation in the US (as of 2012)though we have moved to reporting on homes of one's own, personal assistance services and supportive living approaches, including over 189,000 participants of the latter two categories. [67] [68]

In 2013, Robert Agranoff reported in the "Public Administration Review", that leading state systems in the US (in Intellectual and Developmental Disabilities) indicated an 80-90% conversion from a large institutional system to small, dispersed community homes and services in the community. [69] These changes were based on efforts in states which involved major organizational changes in the NGO (non-profit agency) sectors (e.g., Fratangelo, 1994), [70] and with variability in state government public policies, departments and financing (e.g., Braddock, Hemp & Rizzolo, 2008). [71]

Community support standards in the US

Supportive living in the US is an important movement within the context of decades of federal policies, sometimes reluctantly, for community support services in communities nationwide as part of community integration, community participation, independent living and inclusion. This movement has been accompanied by a strong emphasis on self-determination, with roots in rehabilitation in the 1950s and also, in education in the 2000s. [72] [73]

In the 1990s, this movement emphasized the skill standards of personnel, including direct service workers who were called "human service workers" and their "community managers" (2013, Department of Labor statistics). [74] [75] Increasingly, in 2013 with the consumer-directed services developed in these fields, education and training standards are being revamped within the context of the new US Direct Support Workforce and the Centers for Medicaid and Medicare. [76]

Community living

The term community living was an outgrowth of the development of "residential services" in the communities in the US (e.g., Wolfensberger, Racino, Bersani, Nisbet, Taylor, and Bogdan of Syracuse University, Graduate Studies in Education, 600), and a departure from the development of institutional facilities. As part of this development and growth, different typologies of these services occurred beginning with group homes, staffed apartments, foster care, and then a variety of new and innovative services such as early intervention, family support services, supportive living and "related services" (e.g., supported employment, supported housing). Today, community living may involve over 43 residential typologies (e.g., Pynoos, Feldman & Ahrens, 2004), [77] including board and care homes, personal care homes, nursing facilities, independent living facilities, supportive living and homeownership, family caregiving, personal assistance services, medical homes, and for elders, assisted living facilities.

In the United Kingdom

Supported living is the term given by local authorities in the United Kingdom to encompass a range of services designed to help citizens with disabilities retain their independence in their local community.

Previously, housing and support were usually provided by a charity or local council. Now mentally and physically disabled people can live in their own home and have personal support provided by another organisation or by hiring a personal assistant (paid visiting or live-in carer).

As of 2009, the government in the UK expected "local councils to give people with learning disabilities a genuine opportunity to choose between housing, care and support options that include:

In the research and development sector, the UK has been a leader in supportive living residences and group homes, [78] and in a concept and practice termed active support [79] as part of community integration.

"Supportive living" in the "Valuing People, 21st Century" report defined this approach as: "concerned with designing services round the particular needs and wishes of individuals and is less likely to result in housing and support that is designed around congregate living. Department of Health research has shown that supported living is associated with people having greater overall choice and a wider range of community activities." (p. 73) [80]

Teams in the UK

Local supported living teams can advise what supported housing is available in any given area. Other assistance may include:

International collaborations

As Linda Ward (1995) wrote in her edited text on "Values and Visions: Changing Ideas in Services for People with Learning Difficulties", [83] "the flaws of the "group home model" were recognised sooner in the USA than the UK." (p. 12). Termed "supportive living", she says these developments have been richly documented by Racino, Walker, O'Connor, & Taylor (1993). [84] Written at the time of the nine-state pilots by the federal government on Community Supported Living Arrangements in the US, she noted great interstate variability in what it was and did identify the primary principles near the 1991 national organizational study (separation of housing and support, one individual at a time, full user choice and control, rejecting no one, and a focus on relationships, with maximum use of informal support and community resources). For comparisons, about the same time, Paul Williams (1995) identified the residential services available in Great Britain, including life sharing, hostels, staffed houses, living alone, lodgings, family placements, group homes, living with families, short-term care, hospitals and village communities, among others. [85]

One of the most important initiatives of the 1980s and 1990s on homes and community living in the United Kingdom was the "influential paper "An Ordinary Life"" which was shared in the US through our internationally known colleague David Towell, then of the King's Fund and Great Britain's National Development Team. [86] One of his books, An Ordinary Life in Practice, [87] was paired with his strategic framework for principled national change. [88] Within the comprehensive book (1988), Richard Brazil and Nan Carle describe an ordinary home life, Linda Ward describes developing opportunities for an ordinary community life, Paul Williams and Alan Tyne values for service development (normalization-based, Wolf Wolfensberger), Alice Etherington, Keven Hall & Emma Whelan as service users (where I live, where I work), Philippa Russell on children and families, Jan Porterfield on regular employment, the late James Mansell on training, David Towell on managing strategic change, and Roger Blunden on safeguarding quality, among others.

In 2013, the current framework is inclusive and sustainable housing and communities, similar in both the US and UK with sustainability worldwide. [89] [90] In 2017, these inclusion initiatives were discussed in relationship to community integration theories at the American Society for Public Administration in Atlanta, Georgia. (Racino, Rolandi, Huston, & Begman, 2017) [91]

Canadians, while not typically using the term supported living which is current in the US, [92] [93] were partners in the institution to community movement which included the "reallocation of some funds toward support and services for community living options" (Prince, 2002). [94] Termed in historical texts, the deinstitutionalization movement, the Nordic countries, and New Zealand and Australia, were early partners in community development. [95] [96]

Related Research Articles

Supportive housing is a combination of housing and services intended as a cost-effective way to help people live more stable, productive lives, and is an active "community services and funding" stream across the United States. It was developed by different professional academics and US governmental departments that supported housing. Supportive housing is widely believed to work well for those who face the most complex challenges—individuals and families confronted with homelessness and who also have very low incomes and/or serious, persistent issues that may include substance use disorders, mental health, HIV/AIDS, chronic illness, diverse disabilities or other serious challenges to stable housing.

Developmental disability is a diverse group of chronic conditions, comprising mental or physical impairments that arise before adulthood. Developmental disabilities cause individuals living with them many difficulties in certain areas of life, especially in "language, mobility, learning, self-help, and independent living". Developmental disabilities can be detected early on and persist throughout an individual's lifespan. Developmental disability that affects all areas of a child's development is sometimes referred to as global developmental delay.

<span class="mw-page-title-main">Rehabilitation Act of 1973</span> United States law

The Rehabilitation Act of 1973 is a United States federal law, codified at 29 U.S.C. § 701 et seq. The principal sponsor of the bill was Rep. John Brademas (D-IN-3). The Rehabilitation Act of 1973 replaces preexisting laws to extend and revise the authorization of grants to States for vocational rehabilitation services, with special emphasis on services to those with the most severe disabilities, to expand special Federal responsibilities and research and training programs with respect to individuals with disabilities, to establish special responsibilities in the Secretary of Health, Education, and Welfare for coordination of all programs with respect to individuals with disabilities within the Department of Health, Education, and Welfare, and for other purposes. It created the Rehabilitation Services Administration.

<span class="mw-page-title-main">Long-term care</span> Services for the elderly or those with chronic illness or disability

Long-term care (LTC) is a variety of services which help meet both the medical and non-medical needs of people with a chronic illness or disability who cannot care for themselves for long periods. Long-term care is focused on individualized and coordinated services that promote independence, maximize patients' quality of life, and meet patients' needs over a period of time.

Person-centred planning (PCP) is a set of approaches designed to assist an individual to plan their life and supports. It is most often used for life planning with people with learning and developmental disabilities, though recently it has been advocated as a method of planning personalised support with many other sections of society who find themselves disempowered by traditional methods of service delivery, including children, people with physical disabilities, people with mental health issues and older people. PCP is accepted as evidence based practice in many countries throughout the world.

<span class="mw-page-title-main">Inclusion (education)</span> Where disabled students spend most of their time with non-disabled students

Inclusion in education refers to including all students to equal access to equal opportunities of education and learning, and is distinct from educational equality or educational equity. It arose in the context of special education with an individualized education program or 504 plan, and is built on the notion that it is more effective for students with special needs to have the said mixed experience for them to be more successful in social interactions leading to further success in life. The philosophy behind the implementation of the inclusion model does not prioritize, but still provides for the utilization of special classrooms and special schools for the education of students with disabilities. Inclusive education models are brought into force by educational administrators with the intention of moving away from seclusion models of special education to the fullest extent practical, the idea being that it is to the social benefit of general education students and special education students alike, with the more able students serving as peer models and those less able serving as motivation for general education students to learn empathy.

"The normalization principle means making available to all people with disabilities patterns of life and conditions of everyday living which are as close as possible to the regular circumstances and ways of life or society." Normalization is a rigorous theory of human services that can be applied to disability services. Normalization theory arose in the early 1970s, towards the end of the institutionalisation period in the US; it is one of the strongest and long lasting integration theories for people with severe disabilities.

<span class="mw-page-title-main">Deinstitutionalisation</span> Replacement of psychiatric hospitals

Deinstitutionalisation is the process of replacing long-stay psychiatric hospitals with less isolated community mental health services for those diagnosed with a mental disorder or developmental disability. In the late 20th century, it led to the closure of many psychiatric hospitals, as patients were increasingly cared for at home, in halfway houses and clinics, in regular hospitals, or not at all.

Wolf Peregrin Joachim Wolfensberger, Ph.D. (1934–2011) was a German American academic who influenced disability policy and practice through his development of North American Normalization and social role valorization (SRV). SRV extended the work of his colleague Bengt Nirje in Europe on the normalization of people with disabilities. He later extended his approach in a radical anti-deathmaking direction: he spoke about the Nazi death camps and their targeting of disabled people, and contemporary practices which contribute to deathmaking.

A group home, congregate living facility, care home, adult family home, etc., is a structured and supervised residence model that provides assisted living and medical care for those with complex health needs. Traditionally, the model has been used for children or young people who cannot live with their families or afford their own homes, people with chronic disabilities who may be adults or seniors, or people with dementia and related aged illnesses. Typically, there are no more than six residents, and there is at least one trained caregiver there 24 hours a day. In some early "model programs", a house manager, night manager, weekend activity coordinator, and four part-time skill teachers were reported. Originally, the term group home referred to homes of 8 to 16 individuals, which was a state-mandated size during deinstitutionalization. Residential nursing facilities, also included in this article, may be as large as 100 individuals in 2015, which is no longer the case in fields such as intellectual and developmental disabilities. Depending on the severity of the condition requiring one to need to live in a group home, some clients are able to attend day programs and most clients are able to live normal lifestyles.

Psychiatric rehabilitation, also known as psychosocial rehabilitation, and sometimes simplified to psych rehab by providers, is the process of restoration of community functioning and well-being of an individual diagnosed in mental health or emotional disorder and who may be considered to have a psychiatric disability.

Supported employment refers to service provisions wherein people with disabilities, including intellectual disabilities, mental health, and traumatic brain injury, among others, are assisted with obtaining and maintaining employment. Supported employment is considered to be one form of employment in which wages are expected, together with benefits from an employer in a competitive workplace, though some versions refer to disability agency paid employment. Companies such as Skilcraft in the United States are an example of "supported employment" which is defined in law for state and federal reimbursements.

<span class="mw-page-title-main">John O'Brien (advocate)</span>

John O'Brien is a leading thinker who has written widely in the field of disability. He is a pioneer and lifelong advocate of Person Centred Planning. To this end, he was co-developer of two models for person centred planning, namely the McGill Action Planning System (MAPS) and Planning Alternative Tomorrows with Hope (PATH). His values based approach emphasises learning with each person about the direction their lives could take, challenging and overcoming practices, structures and values that lead to segregation and underestimation rather than inclusion, and an approach to change in people's lives based on 'imagining better'. His thinking is based on Social Role Valorisation and the Social model of disability. He is an Associate Editor of Mental Retardation, and on the Advisory Boards of the Georgia Advocacy Office and Georgia PASS. With Herbert Lovett, O'Brien co-wrote “Finding A Way Toward Everyday Lives,” a paper cited by others in the disabilities field as a significant reference point in the early development of person-centered planning.

The Family Movement, also known in the past as the Parent Movement, is an arm of the disability rights movement, a larger social movement. The Family Movement advocates for the economic and social rights of family members with a disability. Key elements include: social inclusion; active participation; a life of meaning; safety; economic security; accessibility and self-determination. The family movement has been critical in closing institutions and other segregated facilities; promoting inclusive education; reforming adult guardianship to the current supported decision-making; increasing access to health care; developing real jobs; fighting stereotypes and reducing discrimination.

Community integration, while diversely defined, is a term encompassing the full participation of all people in community life. It has specifically referred to the integration of people with disabilities into US society from the local to the national level, and for decades was a defining agenda in countries such as Great Britain. Throughout recent decades, community integration programs have been increasingly effective in improving healthcare access for people with disabilities. They have been valued for providing a "voice for the voiceless"

Family support is the support of families with a member with a disability, which may include a child, an adult, or even the parent in the family. In the United States, family support includes "unpaid" or "informal" support by neighbors, families, and friends, "paid services" through specialist agencies providing an array of services termed "family support services", school or parent services for special needs such as respite care, specialized child care or peer companions, or cash subsidies, tax deductions or other financial subsidies. Family support has been extended to different population groups in the US and worldwide. Family support services are currently a "community services and funding" stream in New York and the US which has had variable "application" based on disability groups, administrating agencies, and even, regulatory and legislative intent.

Gunnar Dybwad (1909–2001) was an American professor and advocate for the rights of people with disabilities, particularly developmental disabilities. He is best known for his support for the social model of disability, reframing disability accommodations as a matter of civil rights, not medical treatment. The American Association on Intellectual and Developmental Disabilities gives out the Dybwad Humanitarian Award annually in his honor.

For many elderly carers of a relative who has a learning or other disability, future planning is an issue. The population of older parents who have children with a learning disability is growing and many of their children are likely to outlive them. In many cases the caring role can span up to seven decades, ending only with their death. Governments and other service providers cannot ignore the pressing needs of this population and their parent and sibling carers. In most countries, family carers provide inexpensive care for a person with a learning disability and other disabilities. This trend is set to continue in England. Demographic changes and the health needs of these two growing populations must be considered against government policy constraints and limited in-home and external care options in order to avoid a crisis. The consequences of not supporting these family carers will lead to crisis management, increase in distress and care giving burdens, and increased spending on unsuitable crisis placements. Housing and financial guidance are issues for caregivers.

As of 2017, approximately 1.4 million Americans live in a nursing home, two-thirds of whom rely on Medicaid to pay for their care. Residential nursing facilities receive Medicaid federal funding and approvals through a state health department. These facilities may be overseen by various types of state agency.

The Connecticut Department of Developmental Services (DDS) is a state agency of Connecticut providing services to individuals with developmental disabilities and their families. Its headquarters are in Hartford. According to its official Twitter description, "CT DDS serves more than 20,000 individuals [with] intellectual disability and their families, including 4,000 infants and toddlers in the Birth to Three System."

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