Introduction

Intellectual disability is a complex and multidimensional experience and thus measuring it poses several challenges (World Health Organization & The World Bank, 2011). Crucially, any data must not be taken as definitive but rather as illustrative. According to Inclusion International, there are more than 130 million people with intellectual disabilities worldwide (Inclusion International, 2006). For the U.S., the Centers for Disease Control and Prevention [CDC] and the Health Resources and Services Administration [HRSA] (2014) estimate a prevalence of developmental disability of 13.87 % between 1997 and 2008, with the said prevalence having increased by 17.1 % over the last 12 years. Within these figures males exhibit twice the prevalence of intellectual disability than females, while children from families with an income below the federal poverty level have a higher prevalence than the rest of the U.S. population.

According to the Americans with Disabilities Act (ADA) (42 U.S.C.A. §12102), disability comprises three elements or situations, as follows: First, a physical or mental impairment that substantially limits one or more major life activities (42 U.S.C.A. §12102, 1(a)); second, a record of such an impairment (42 U.S.C.A. §12102, 1(b)); or third, being regarded as having such an impairment (42 U.S.C.A. §12102, 1(c)). Additionally, according to the American Association on Intellectual and Developmental Disabilities (2014) intellectual disability is a significant limitation for both intellectual functioning and adaptive behavior and thus covers many everyday social and practical skills. On the one hand, intellectual functioning refers to general mental capacity, such as learning, reasoning and problem solving, among other skills. On the other hand, adaptive behavior refers to the collection of social and practical skills learned and performed by people in their everyday lives. This kind of disability must have originated before the age of 18 (see Atkins v. Virginia, 2002).

Three caveats must be borne in mind when using any definition of intellectual disability. First, other factors must be taken into account when defining intellectual disabilities, such as the community environment, culture and linguistic diversity. Second, any assessment of limitations must coexist with personal strengths and possibilities so that persons with disabilities are not defined by what they cannot do. Third, professionals, families and persons can only determine a disability and tailor individualized support on the basis of numerous many-sided evaluations.

For those individuals with intellectual disabilities the Right to the City requires them to exercise full-fledged citizenship. This umbrella right encompasses, first, freedom and self-determination and recognition as right holders, second, access to services, support and social opportunities provided in and by the city, and third, meaningful community inclusion and participation. Located within neighborhoods and communities, group homes constitute small residential facilities and usually host six occupants or fewer. They are staffed 24/7 by trained caregivers that enable persons with intellectual disabilities to increase their independence and develop the capacity to live as independently as possible in a family-like environment (Cook, 1997).

This paper elaborates on the idea that under a human rights approach group homes can foster and ensure the Right to the City for those with intellectual disabilities. This is possible using the services made available through the Social Security Act §1915(c) on the Home and Community-Based Waiver, along with some additional activities and strategies. This paper comprises two sections. The first presents the idea of the Right to the City of persons with intellectual disabilities. The second analyzes how the services of §1915(c) can promote social and self-recognition for persons with intellectual disabilities, as well as provide protection and foster empowerment and community inclusion.

The right to the city and persons with intellectual disabilities

Urbanization represents a mainstream trend within globalization and today more people are living in urban areas. According to the World Bank (2014), as of 2012, 52.5 % of the world population lives in a city. This global average is marked by great differences among countries and regions: the United States (82.6 %), Latin America (79.0 %) and Europe (74.1 %) sit above the global average, while China (51.8 %), Sub-Saharan Africa (36.8 %) and India (31.7 %) sit below it. Furthermore:

Globally, the level of urbanization is expected to rise from 52 % in 2011 to 67 % in 2050. The more developed regions are expected to see their level of urbanization increase from 78 % to 86 % over the same period. In the less developed regions, the proportion urban [sic] will likely increase from 47 % in 2011 to 64 % in 2050 (United Nations Department of Economic and Social Affairs, 2012, p. 4).

Beyond numbers, the urbanization process presents new social challenges. In a broader sense it entails a challenge to equality and non-discrimination with reference to the extent to which and in what form social opportunities are available to all citizens, as they are provided both within and by the city. The process also highlights tensions between wealth concentration and the urbanization of poverty, as social divisions and spatial segregation affect those who inhabit cities (Unesco, 2006). Within this global process those groups traditionally excluded from society, such as persons with intellectual disabilities, face a higher risk of increased discrimination, mainly due to their aggregated exclusion, social invisibility and lack of social and political clout.

Cities do not present a fixed reality that should be accepted by the community. Instead, communities should understand the city as a blueprint of its history, intervene in it, reimagine it and change it. Cities are institutions and privileged social locations, as well as places for social encounters and collective construction. They are places where individuals’ life-projects become entangled with those of others, thus forming a collective project and the very city itself. As such, cities are more than places, they are political frameworks within which basic and complex human rights can be ensured or violated. As political frameworks for everyday life, cities are not neutral spaces but are also, according to Brenner, highly politically and ideologically mediated places, as well as socially contested and malleable spaces that demand continual reconstruction as sites (Brenner, 2012). In essence, “cities are not only sites for strategies of capital accumulation; they are also arenas in which the conflicts and contradictions associated with historically and geographically specific accumulation strategies are expressed and fought out” (Brenner, Marcuse & Mayer, 2012, p. 2).

Because cities are culturally rich and diverse collective spaces that pertain to all of their inhabitants, the World Charter on the Right to the City defines this right as the equitable usufruct of cities and what they have to offer which confers upon citizens, and in particular to those who are in vulnerable and marginalized situations, legitimacy of action and organization in order to achieve full exercise of their right to free self-determination and an adequate standard of living (World Social Forum, 2004, art. I(2)).

According to Colin (2006) and Abumere (2006), the Right to the City enshrined in the World Charter has three pillars. First, the equitable usufruct of what cities have to offer which, under the principle of equality and non-discrimination (World Social Forum, 2004, art. I(3)) entails that the services, possibilities and opportunities from which cities are comprised must not exclude or discriminate against anyone. Second, following Marcuse, even if the Right to the City initially appears as the right to consume that which cities have to offer, the idea of the Right to the City includes the right to produce the city as well as to enjoy it (Marcuse, 2012). What the city has to offer, and the opportunities and possibilities that must be equally available, should thus be an outcome of effective political and participatory processes promoted by the authorities (World Social Forum, 2004, art. II(1.2)). Third, because the Right to the City is interdependent on other internationally recognized human rights, the equitable usufruct of a city involves ensuring effective access to other human rights critical within urban settings, such as the right to work, education, social security, public health, water, energy and public transportation. The Right to the City becomes impossible when basic human rights are violated. However, ensuring these rights alone does not necessarily lead to the Right to the City; indeed, much more has to be done from a full-fledged citizenship perspective.

The actual legal concept of the Right to the City enshrined in the World Charter is the most recent evolution of the political, philosophical and sociological analysis begun by Henry Lefebvre (1968) and continued by several other scholars (Fernandes, 2006a; 2006b; 2007; Unesco, 2006) In Marcuse’s (2012) words:

The right to the city is a demand for a broad and sweeping right, a right not only in the legal sense of a right to specific benefits, but a right in the political sense, a claim not only to a right or a set of rights to justice within the legal system but a right on a higher moral plane that demands a better system in which potential benefits of an urban life can be fully an entirely realized (p. 34).

The Right to the City is a call for urban justice

Even though the World Charter on the Right to the City is not a binding international treaty, the ongoing legal evolution and discussion of this particular human right provides a useful analytical tool for urban policies and ensuring other human rights in urban settings. It also presents a unique opportunity to make visible the need for a full exercise of citizenship for those with intellectual disabilities and explores some practical ways through which this might be fostered.

Planning and governing a diverse city

Even though the Right to the City is conferred on all inhabitants, the World Charter places special emphasis on the challenges that this right may imply for traditionally excluded groups and those in vulnerable situations, such as persons with intellectual disabilities. The World Charter states that these groups and persons should have access to measures of protection and integration, resource distribution, essential services, and protection from discrimination (World Social Forum, 2004). Many groups should be subject to such protection, including persons with disabilities, those living in poverty, victims of violence, forced migrants, refugees, and in general those living in disadvantaged situations with respect to the rest of the inhabitants of the city (World Social Forum, 2004).

However, the presence, visibility and leadership of those with intellectual disabilities who are categorized as “excluded” or “in vulnerable situations” do not come easy. According to Liss (2012), the social movement on the Right to the City comprises a decreasing middle class and a set of migrants in disadvantaged positions, thus presenting a social segment that faces housing issues, foreclosure, segregation and exclusion from public space. This is a group in which it is possible to find persons with disabilities, but they rarely exercise leadership. When mixed with different and numerous individuals those with disabilities in general, but more often those with intellectual disabilities, tend to be forgotten about and rendered invisible. The social pattern of exclusion and discrimination repeats itself.

In this context, the Right to the City requires planning and governing the city under a diversity approach. Traditionally, “[u]rban and state planning have tended to reflect the interests of politically powerful groups. They have failed to allocate resources on the bases of fairness and equality” (Beall, 1997, p. 131). Beall asserts that persons with disabilities are not systematically considered by planners or local authorities and are also among society’s poorest and most excluded. Thus, their chances of being effectively included into the political mainstream without powerful and strong advocacy are few. ^[1] Under the Right to the City umbrella, planning and governing need to overcome homogenization practices that lead to exclusion and marginalization. They need to embrace differences and individualities based upon principles of social inclusion and equality (Beall, 1997).

When it comes to disability, and intellectual disabilities, the diversity approach for planning and governing the city faces many challenges. In particular:

Planners need to be aware that [persons with disabilities] cannot be considered a homogenous group. Disability varies in type, extent, and some are present from birth, while others are acquired through poverty, work, war, accident or old age. There is also a wide socio-economic diversity within the urban [persons with disabilities themselves] (Beall, 1997, p. 134).

There is also a need to overcome the excess attention placed on accessibility issues since not all the inclusion needs of those with disabilities ­­­―and especially those with intellectual disabilities― are addressed by solving accessibility issues in public transportation and other facilities. Additionally, planning and governing must also overcome the excess attention given to providing assistive devices and prosthesis as a central strategy for inclusion. The social model (Kayess & French, 2008; Quinn, 2009) for disability must affect these practices by avoiding pity and segregation, as well as by understanding disability not as a mere limitation or impairment but as part of the diverse human condition (United Nations, 2006, art. 3(d)). Assistance must then be given to the extent necessary while further and more varied opportunities to be included in the community are made available.

1.2. From self-recognition to full-fledged citizenship

For those with intellectual disabilities the Right to the City as the equitable usufruct of what the city has to offer is a right of self-determination. It is the right to be included in the community and exercise full-fledged citizenship. Because the opportunities and possibilities in the city for persons with intellectual disabilities are countless, as are their desires, exercising the Right to the City presents an open-ended question, an ongoing political struggle and a permanent political process. This relation between full-fledged citizenship and self-determination may be taken for granted when it comes to citizens without disabilities, yet it is a key issue for the population at stake.

The Right to the City for those with intellectual disabilities requires them to be full-fledged citizens. Under this umbrella this right encompasses, first, freedom and self-determination and recognition as right holders. Second, access to the services, support and social opportunities provided within and by the city. Third, meaningful community inclusion and participation.

First, the ideas of freedom, self-determination and recognition as right holders suggest that the Right to the City cannot be exercised if those with intellectual disabilities do not recognize themselves as entitled to it. This may sound like a given, but in contexts of social exclusion, segregation and isolation it cannot be taken for granted. It is key that those with intellectual disabilities recognize themselves as right holders, as part of a group and a community, and as citizens. This idea goes against the mainstream recognition of those with intellectual disabilities as patients, users of supported-living facilities and care receivers. In parallel, it is crucial to foster the same level of recognition within the society, community, family and inner circle of the person.

Second, when it comes to the Right to the City of those with intellectual disabilities, ensuring and exercising self-determination and freedom becomes paramount. Gaining access to the opportunities and possibilities that the city has to offer remains impossible, or at least incomplete, if persons with disabilities are subject to inhumane or degrading treatment (United Nations, 2006, art. 15); if they do not live free from exploitation, violence and abuse (United Nations, 2006, art. 16); if they do not enjoy their freedom of movement or choose their place of residence (United Nations, 2006, art. 18). When it comes to persons with intellectual disabilities the concept of freedom presents powerful ideas: the possibility to be themselves, to be different from one another, and to make simple and basic life decisions. In many cases those attempts to hinder such possibilities can be regarded as abuse. Respect for the inherent dignity, individual autonomy and freedom to make personal choices (United Nations, 2006, art. 3(a)) of those with intellectual disabilities should be protected in order to foster and enhance their community inclusion and social participation and thus their Right to the City.

Third, the idea of the Right to the City for those with intellectual disabilities is incomplete if some human rights, services and support systems are lacking. As a basis for fostering community inclusion, inter alia, and under the umbrella of the right to an adequate standard of living, ^[2] the rights to food, shelter and housing must be protected. However, this task remains uncompleted if it results in segregation, exclusion or isolation. The endpoint of ensuring these and other rights in light of the Right to the City is the effective inclusion of those with intellectual disabilities within their communities. Yet this task cannot be completed solely by placing their home in the neighborhood. Much more has to be done.

The Right to Live Independently and to Be Included in the Community (United Nations, 2006, art. 19) entails two separate but correlated issues: independence and inclusion. Living independently can mean several different things to different persons with intellectual disabilities. From a general perspective, it means to live, with the support needed, by oneself and to have the opportunity to choose a place of residence, how, where and with whom to live, and not be obliged to live in a particular living arrangement (United Nations, 2006, art. 19(a)) It also means to “have access to a range of in-home, residential and other community support services, including personal assistance” (United Nations, 2006, art. 19(b)). From a simple perspective, it means to be able to decide upon and make very basic decisions in life, such as what to wear, what and when to eat, when to go to bed, where and with whom to go out. Simple decisions that have little legal importance to many hold great importance when it comes to those with intellectual disabilities.

However, living independently does not necessarily prevent exclusion, isolation or segregation. In order to ensure the Right to the City those with intellectual disabilities must be included in the community. Regardless of concerted efforts, the UN Convention on the Rights of Persons with Disabilities falls short of shedding light on how to achieve this. Clearly it is not enough that, “[c]ommunity services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs” (United Nations, 2006, art. 19(c)). In order to be included those with intellectual disabilities should be valuable members of their communities. They should not only be present and recognized but also play an effective role in what the community is and can be. Their life projects must not be isolated or segregated, but established along with those of others, they must be active in their families, be able to form one, and have connections and affective ties with other members of the community.

Finally, community inclusion is decisive since it has a positive impact upon the daily lives of persons with intellectual disabilities. However, under the Right to the City umbrella this is incomplete if it does not lead to broader processes of social inclusion or political and public participation (United Nations, 2006, art. 3(c)). The Right to Participate in the Political and Public Life, as enshrined in the CRPD and read in light of the Right to the City, mandates having an effect upon the political community within the city, namely the ward, the district and the metropolitan area, both politically and publicly. The Right to Participate in the Political life means, among others, being able to vote responsibly with the support needed, as well as being able to hold office and perform public functions (United Nations, 2006, art. 29(a)). The Right to Participate in the public life means, among others, promoting “an environment in which persons with disabilities can effectively and fully participate in the conduct of public affairs” (United Nations, 2006, art. 29(b)), mainly by participating in organizations and associations concerned with local and city affairs. Because the city comprises citizens and not patients or care receivers, the powerful idea behind the Right to the City for those with intellectual disabilities, and at the same time the main challenge of any supported-living strategy, is that of fostering full-fledged citizenship.

Group Homes and the Right to the City

For individuals and citizens there exists a close relationship between cities and homes since their life projects unfold between the two. The city plays the roles of physical place, social institution and framework for political struggle. It constitutes a public space for interaction and mutual recognition. It is where individuals’ life projects become entangled to form a collective project. Homes play the role of private place, that is, a place to rest, to be alone or with the family, and a place in which to decide individually upon the simple and intimate issues of life. The daily transit from one site to another constitutes the basic socialization and allows for the exercise of citizenship. Ensuring the Right to the City for those with intellectual disabilities, and particularly for those living in group homes or in other independent arrangements, is framed by this transit.

Group Homes versus Independent Living Arrangements: A false dilemma?

Group homes present just one supported-living strategy available to persons with intellectual disabilities across the U.S., Canada and some European countries. They are often small residential facilities that typically host six or fewer occupants, are located within communities, are staffed 24/7 by trained caregivers and thus enable persons with disabilities, mainly intellectual and psychosocial, to increase their independence and develop the capacity to live as independently as possible in a family-like environment. Bearing in mind the criticisms that group homes may prompt, according to Walker, supported-living strategies should express a fundamentally different relationship for people with intellectual disabilities than other medical approaches, such as institutionalization. Instead of controlling people with disabilities in order to rehabilitate them, supported-living strategies should seek to cooperate with people with disabilities in order to develop the assistance they need to get on with their own lives (Walker, 2012).

No standard group home exists in the U.S., yet they often share some common practices, services and characteristics. As pointed out in the Encyclopedia of Mental Disorders (2004):

One of the goals of group home living is to increase the independence of residents. Group home staff members teach residents daily living and self-care skills, providing as little assistance as possible. Daily living skills include meal preparation, laundry, housecleaning, home maintenance, [and] money management […]. Staff also assure that residents receive necessary services from community service providers, including medical care, physical therapy, occupational therapy, vocational training, education, and mental health services.

Even if group homes have evolved into smaller living arrangements and there are other strategies available, they still present an important method for providing home and community services in the U.S. They either constitute a powerful tool for enhancing independent living and fostering the Right to the City, or provide a route to the abuse, segregation and exclusion of persons with intellectual disabilities. Beyond the name of the living arrangement, the success of the strategy depends on how it unfolds on a daily basis.

The Right to Live Independently and Included in the Community (United Nations, 2006, art. 19) can be achieved via many different living arrangements. It can involve living alone, with the family, with roommates or even being homeless. Regardless of the specific arrangement, what matters is that the arrangement must be decided upon freely and with the support needed. Persons with intellectual disabilities must be able to decide where and with whom to live and they must retain the right to adjust and change the living arrangement according to what best fits their needs and desires.

The tension between group homes and other independent living arrangements represents a false dilemma. As previously stated, group homes either constitute a powerful tool for enhancing independent living and foster the Right to the City, or can provide a route to the abuse, segregation and exclusion of persons with intellectual disabilities. In the same sense, independent living arrangements in which persons with disabilities live alone or with roommates in a private house do not in themselves guarantee avoidance of segregation, exclusion or isolation.

Independence and inclusion are inextricably linked. In both strategies everything depends on what happens on a daily basis and indeed how it happens, as well as on how the transit from home to the city, and vice versa, occurs. Both strategies have the potential to present positive environments when they are tailored to the person’s needs, are chosen freely by them, enhance individuality, promote family and community participation, and promote effective citizenship. As stated by Reinhard (2012), group homes can become “a nursing home on training wheels” (p. 55) and constitute a façade for institutionalization on a smaller scale. To avoid this risk the adoption of some particular features might prove useful. No more than four to six unrelated persons with disabilities must live within the group home, an individual or family member must own or lease the residence, which must have lockable access and egress to living quarters, and individuals must have their private space and retain the right to customize it. However, not all of these elements are actually required by Centers for Medicare and Medicaid Services (2014) when waiving federal funds to group homes. On the other hand, independent-living arrangements do not guarantee life quality, protection and inclusion in the community simply by virtue of placing persons with disabilities outside a group home and within a neighborhood. The following ideas focus on group homes as independent living arrangements and how they might ensure the Right to the City through §1915(c) services and benefits.

§1915(c) Home and Community-Based Waivers

The Secretary of Health and Human Services (HHS) is authorized by the Social Security Act, particularly by §1915(c), to waive certain Medicaid requirements (CMS, 2014) Home & Community-Based Waivers offer a way for states to provide a combination of medical and non-medical, home and community-based services that avoid institutionalization and promote community living for persons with intellectual disabilities (CMS, 2014).

Even if many group homes are funded and operated by non-profit, civil or religious organizations, at present state and federal funds, such as the Medicaid §1915(c) Home and Community-Based Service Waiver, continue to present the main mechanism for supporting these strategies. According to The Henry J. Kaiser Family Foundation (2014a), as of 2011, 1,366,337 persons have participated in the §1915(c) Waiver; 570,584 of these in the intellectual disability and developmental disabilities (ID-DD) type, 492,920 in the aged and disability type, 81,704 in physical disabilities, and 2,675 in mental health. Waiting lists for §1915(c) include 316,673 in the ID-DD type and 122,908 in the aged and disability type. General expenditures total more than US$ 24.2 billion for the ID-DD type, US$ 5.4 billion for the aged and disability type, and US$ 1.5 billion for physical disabilities. It is clear that those with intellectual disabilities, and persons with disabilities in a broader sense, are the main beneficiaries of §1915(c) (The Henry J. Kaiser Family Foundation, 2014b). According to Rizzolo, Friedman, Lulinski-Norris and Braddock (2013), the main service funded through the waiver is that of residential habilitation services, which covers 53 % of available resources and accounted for approximately $12.4 billion in 2010. Day habilitation covers 19 %, while other services, such as companions, homemakers, chores, personal assistance and supported living, cover 11 % of the total.

Waiver services are aimed at complementing and supplementing other available services and are provided by federal, state or local authorities, as well as by other public, community and non-profit programs. §1915(c) gives states the flexibility to determine target groups and specify services when designing waivers. When it comes to beneficiary groups states must specify the level of institutional care that persons must need in order to enter the program; the factors used to identify the targeted group, such as age or type of condition; and the Medicaid eligibility groups (CMS, 2014). Generally, waiver programs cover a wide range of Medicaid beneficiaries, namely, older persons, persons with intellectual, mental, physical and multiple disabilities, and persons living with AIDS. §1915(c) comprises a fixed list of available services, however it is for states and organizations,

(…) to request the authority to offer ‘other’ services that are not expressly authorized in the statute as long as it can be demonstrated that the service be necessary to assist a waiver participant to avoid institutionalization and function in the community” (CMS, 2014, p. 111).

There are three main groups of services available in §1915(c) on which the ongoing analysis of the Right to the City focuses. First, basic home services aimed at supporting or providing direct personal care, household care and other related basic tasks. Second, habilitation and rehabilitation services designed to assist persons in acquiring, retaining and improving self-help, socialization and adaptive skills necessary to reside successfully in home and community-based settings and to live in the community (CMS, 2014). Third, other services aimed at supporting and enhancing transitions from the group home to independent living arrangements (CMS, 2014). However, with the flexibility that is provided in relation to possible services one problem arises, namely, that flexibility and innovation possibilities regarding what happens within group homes or in other independent living arrangements become very limited because they rely predominantly on organizations and other providers. Flexibility towards innovation regarding the services provided in group homes and other independent living arrangements also fall under the responsibility of federal regulations for the subject.

Group homes can foster social and self-recognition

Through §1915(c) services, and with some additional activities, group homes can foster self-recognition as right holders for persons with disabilities, as well as social recognition within the neighborhood. Even if §1915(c) forms part of the Social Security Act and Medicaid, its implementation has the ability to transform the mainstream recognition of persons with intellectual disabilities as patients or care receivers into that of those with the status of right holders and citizens. This is key to ensuring the Right to the City because the benefits it enshrines and the political struggle it encompasses do not need patients or passive individuals, but empowered and active citizens.

The organization running the group home should recognize itself under the human rights approach, which also implies crosscutting its practices and activities with principles of dignity, individual autonomy, freedom and independence (United Nations, 2006, art. 3(a)); non-discrimination (United Nations, 2006, art. 3(b)); full and effective participation and inclusion in society (United Nations, 2006, art. 3(c)); and respect for difference and acceptance of disabilities as part of human diversity (United Nations, 2006, art. 3(c)).

The basic §1915(c) service for fostering self-recognition as rights holders is that of case management, by which participants are assisted “in gaining access to needed waivers and other state plan services, as well as medical, social, educational and other services, regardless of the funding source for the services to which access is gained” (CMS, 2014, p. 146). It is commendable that this service does not only include health services, but also social and educational services. However, special attention must be afforded so that it can develop a human rights approach and effectively support broad access to social opportunities within the city. Case management should not simply be aimed at gaining access to services, but also at empowering persons with intellectual disabilities as right holders, in order to assess and address barriers, to mobilize themselves towards its social and community interests. To accomplish this the process of planning and managing services for and with persons with intellectual disabilities must avoid universally designed services to which persons must adapt as passive care receivers. Instead, because everyone has a positive contribution to make to society, and because everyone should have control over their lives they should play an active role in planning their access to services and other social opportunities (Dowling, Manthorpe & Cowley, 2007). At the same time, they should be encouraged to play an active role within the organization that runs the group home (Dowling et al., 2007).

One way to achieve this is by implementing person-centered planning when developing case management, as well as throughout group home activities. Person-centered planning refers to methods and practices used to design care services that are responsive to the needs, desires and future goals of persons with intellectual disabilities (Ryan & Carey, 2008). It represents a tailored process under which participants have control over who helps them with the basic and personal activities involved in daily living (Mahoney, 2011). Instead of adopting a controlling role, professionals perform tasks by introducing methods for, contributing to, safeguarding and implementing the planning process (Sanderson, Thompson, & Kilbane, 2006). Person-centered planning encompasses elements such as personhood, knowing the person, maximizing choice and autonomy, quality care, nurturing relationships, and providing a supportive physical and organizational environment (Crandall, White, Schuldheis, & Talerico, 2007). All of these are compatible with the above-described human rights approach. As pointed out by Sanderson et al. (2006), this has a positive impact on the life experiences of persons with intellectual disabilities because it helps to improve social networks, contact with families and friends, community activities, and choices.

However, implementing person-centered planning is not free from barriers. The process of developing case management under this method should take into consideration at least two common problems: First, the slow pace of change within traditional institutions and organizations, inflexible funding sources that can hinder creativity and innovation in planning and providing services, and staff turnover (Dowling et al., 2007); second, the need for strong management and administrative support, as well as productive collaborations between caregivers and the administrative personnel (Crandall et al., 2007). Additionally, the process must be transparent and accountable. Therefore, even if the person forms the center of the planning process and the organization plays a key role, there still exists the need for supervision and observation on behalf of the authorities, families and representative organizations. This will ensure that the fate of persons with disabilities does not only rely on the organization running the group home.

Through the services outlined under §1915(c), and some additional activities, group homes can protect and empower the environments within which persons with intellectual disabilities live. Protection and empowerment may indeed form two sides of the same coin in that by protecting persons with intellectual disabilities the attainment and maintenance of a higher standard of living is possible, as is a life free from abuse and violence. Through empowerment persons with disabilities will be able to identify an environment that promotes their capacities and possibilities and supports them in the construction and living of their own life projects.

The enjoyment of the opportunities and possibilities that the city offers is impossible, or at least lacking, if persons with intellectual disabilities are subject to inhumane or degrading treatment; if they do not live free from exploitation, violence and abuse; if they do not enjoy their freedom of movement or to choose their place of residence. The idea of protection is neither incompatible with the human rights approach nor with the empowerment feature. Both acknowledge disability as a feature of human diversity and provide for tailored support when needed. What is important to bear in mind is the fact that protection is not the end goal but a means to fostering and enhancing other human rights and, of course, the Right to the City.

Through the services outlined in §1915(c) persons with intellectual disabilities are able to access a wide range of tailored support and protection within group homes. Three services provide for the said protection: homemakers, home health aides and personal care. A homemaker performs general household tasks such as meal preparation and routine household care when the person with an intellectual disability who is regularly responsible for these activities is temporarily absent or unable to manage the home and care for him or herself or others in the home (CMS, 2014). The home health aide provides health services different from those furnished under the state plan or under any other health plan. Finally, personal care comprises a range of assistance services that relate to daily activities such as bathing, dressing, toileting, transferring, maintaining continence, and other more complex factors, such as personal hygiene, light housework, laundry, transportation, grocery shopping, using the telephone, medication and money management. Protection is compatible with the Right to the City and fulfills one of its central meanings by ensuring effective access of other human rights within the urban setting. Group homes often present an effective strategy for ensuring the right to an adequate standard of living, and under this umbrella other human rights are included, such as the rights to food, shelter and housing, among others.

Along with providing the mentioned services, group homes can empower persons with intellectual disabilities and prevent them from becoming dependent on services, instead helping them to use them to achieve their own goals and desires, as well as live their own life projects. Empowering requires persons with intellectual disabilities to be able to be themselves and thus be different from one another. It requires that they make very simple and basic life decisions while also necessitating the enhancing of their individuality and personhood. Any attempt to hinder the possibility of empowerment can be considered abuse. Through empowerment group homes are able to move beyond the protection of human rights in urban settings by not only being able to protect the said human rights related to the household, but also by being able to promote other rights such as self-determination, freedom of movement, and legal capacity, among others.

Under §1915(c) group homes should also develop activities aimed at increasing positive and social recognition within the neighborhood and the broader community. Providing personal assistance, care and rehabilitation, either through person-centered planning or other method does not have an effect on building inclusive social networks, inclusive education or employment (Sanderson et al., 2006). Taking seriously persons with disabilities and their desires does not change social perceptions and services by itself – a broader range of activities must be engaged in.

Group homes must not constitute isolated bubbles within the neighborhood and the community. There should be a positive process in the promotion of the social recognition of persons with intellectual disabilities as a basis for community inclusion. Not only must persons with intellectual disabilities recognize themselves as right holders, valuable members of the community and citizens, but their peers must also recognize them as such. Thus, group homes should involve activities that address the surrounding neighborhood and community. According to Cook (1997), failing to understand and address neighbor concerns often interferes with the successful community inclusion of residents.

Community opposition has been present in the case law and has been assessed and addressed in a way that prevents it from hindering the location of group homes. Regarding the issue of requiring a special use permit for a group home, in Cleburne where the same requirement is not required of other living arrangements, such as apartment houses, multiple dwellings, boarding and lodging houses, hospitals and nursing homes, the U.S. Supreme Court held that requiring such a permit deprives persons with disabilities of the equal protection of the law. The Court also found that requiring the permit in such a case rested on irrational prejudice, negative attitudes, unsupported opposition and bias on the part of the neighbors, and not on the legitimate interests of the city.

In Association for Advancement of the Mentally Handicapped et al., a case involving an ordinance of the City of Elizabeth (NJ) (2004), following the state statute automatically denied permits to group homes of more than six persons in situations of proximity to other group homes, schools or day care centers. The District Court held that the city ordinance and the New Jersey statute discriminated against persons with disabilities and violated the Fair Housing Amendments Act. In deciding the case the District Court dismissed two arguments. First, it dismissed the argument that persons with intellectual disabilities pose a danger to the community. It was not proved that automatically denying permits to group homes related in any way to the city's professed objective of securing inhabitants against potentially dangerous persons. Second, it dismissed the argument upon which the said requirements protected the residential character of neighborhoods surrounding group homes. The District Court found no evidence that group homes housing more than six persons with disabilities would detract from a neighborhood's residential character.

Finally, in reference to persons with mental disabilities, and not intellectual disabilities, in J.W. a group home of less than eight persons, which included “newly-released” mental patients, was denied the special permit required by the city ordinance. The Court of Appeals, Ninth Circuit, affirmed the District Court decision that held the denial of the permit arbitrary and violated the due process clause of the 14th amendment because it was not based on proof of “newly-released” mental patients but on the fears and concerns of the neighbors. The Court also held that the denial of the permit was arbitrary because the application satisfied all the criteria; the final decision of a denial was not related to any substantial zoning interest and was instead based on heavy opposition from neighbors at the public hearing.

Along with the said opposition, neighbors often raise concerns concerning declining property values, traffic problems and noise, as well as the fear that one facility will lead to another and thus result in a “group home ghetto” (Cook, 1997, p. 425). Community opposition has led group homes to be located in neighborhoods that are less likely to effectively oppose their introduction into the neighborhood. Therefore, as pointed out by Cook, they are often found in places characterized by low socioeconomic status, high crime, low property values and low voting frequency, which decreases opportunities for meaningful and quality inclusion and therefore may violate the Right to the City (Cook, 1997).

Because neighbors and neighborhoods are essential in ensuring the Right to the City and fostering community inclusion, group homes must promote positive interactions, even before setting and placing the home within the community. Minimal and largely superficial interactions must be avoided. Instead, real friendships, meaningful social interactions, and participation in community facilities, services and opportunities must be promoted.

Group homes can foster community inclusion

Through the services specified in §1915(c), along with some additional activities, group homes can foster the meaningful community inclusion of persons with intellectual disabilities. Meaningful community inclusion is a deep and complex notion that involves a variety of circumstances and elements, within which being physically included in the community and having choices about where to live are simply the initial steps. ^[3] With the court in Horizon, and under the Right to the City umbrella, much more must happen for persons with intellectual disabilities to reach full-fledged citizenship.

§1915(c) comprises a set of services regarding habilitation and rehabilitation that provide the basis for inclusion in the community. Rehabilitation is a concept that has evolved globally. For the World Health Organization (2010), under the label of Community-Based Rehabilitation (CBR), it was primarily a process through which primary health care and services were delivered to persons with disabilities, focusing on physiotherapy, assistive devices, and medical or surgical interventions. However, over the last 30 years its scope has broadened considerably. Globally, CBR has been redefined as “a strategy within general community development for the rehabilitation, poverty reduction, equalization of opportunities and social inclusion of all people with disabilities” (International Labour Organization [ILO], Unesco, & World Health Organization [WHO], 2004) through the combined efforts of persons with disabilities, their families, their representative organizations, the communities, and the relevant governmental and non-governmental institutions (WHO, 2010).

The CRPD enshrines the latest evolution of the Right to Habilitation and Rehabilitation for persons with disabilities in its article 26. It seeks that persons with disabilities attain and maintain maximum independence, as well as full physical, mental, social and vocational ability. From a broader perspective, the right also aims at the full inclusion and participation of persons with disabilities in all aspects of life. The main mechanisms for achieving this end are reached through organizing, strengthening and extending comprehensive habilitation and rehabilitation services and programs, in particular, as stated in article 26, in the areas of health, employment, education and other social services.

Federal regulation defines rehabilitation as the “provision of independent living services, support services, and meaningful opportunities for employment in integrated work settings through the provision of reasonable accommodations” (§701 (a4). Findings; purpose; policy, 29 USCA § 01). However, state regulation provides for more. Generally, rehabilitation is defined as the provision of a wide range of goods and services aimed at attainting and retaining employment, as well as independence. The range of services is often open and comprises “medical and vocational evaluation, including diagnostic and related services, vocational counseling, guidance and placement […] physical restoration, recruitment and training services, […] occupational tools, equipment, supplies, transportation, services to families of persons with disabilities” (3304.11 (D) Definitions, OH ST § 3304.11).

§1915(c) provides for habilitation and rehabilitation services within or outside group homes. These services are designed “to assist participants in acquiring, retaining and improving the self-help, socialization and adaptive skills necessary to reside successfully in home and community-based settings” (CMS, 2014, p. 151). These kinds of services may constitute residential habilitation or day habilitation. The first is defined as:

[…] individually tailored supports that assists with the acquisition, retention, or improvement in skills related to living in the community. These supports include adaptive skill development, assistance with activities of daily living, community inclusion, transportation, adult educational supports, social and leisure skill development (CMS, 2014, pp. 151-152).

The later is similar but takes place in a non-residential setting, that is to say, separate from the person’s residence or living arrangement (CMS, 2014, p. 152).

All approaches to rehabilitation and §1915(c) share the same goal when it comes to rehabilitation: attain and maintain independence and foster community inclusion. In addition to the described services, §1915(c) also provides for expanded habilitation services aimed at enhancing employment inclusion. These services includes, first, prevocational services aimed at preparing the person for paid or unpaid employment, such as teaching, and introducing concepts such as compliance, attendance, task completion, problem solving and safety (CMS, 2014). Second, they include supported employment, which consists of “intensive, ongoing supports that enable participants, for whom competitive employment at or above the minimum wage is unlikely absent the provision of supports, and who, because of their disabilities, need supports, to perform in a regular work setting” (CMS, 2014). However, even if these kinds of services are promising, as pointed out by West, they have not been used in an intensive manner in order to promote effective employment inclusion for persons with intellectual disabilities (West, Revell, Bricout, & Kregel, 1999).

§1915(c) is flexible with regard to where a person with intellectual disabilities can receive rehabilitation services and these are available both to those living in a group home and those in other independent-living arrangements. However, regardless of the living arrangement the rights to rehabilitation and to the city are incomplete if the person ends up being segregated, excluded or isolated; the end point of ensuring the aforementioned rights is to effectively include those with intellectual disabilities within their communities. Yet this task cannot be completed solely by placing a home in a neighborhood and providing for care and protection – much more has to be done.

Case law has clearly established the importance of inclusion in the community for persons with intellectual disabilities and how group homes can foster and enhance this. In Cleburne the U.S. Supreme Court pointed out that group homes are beneficial for the city because through them persons with intellectual disabilities can be included in the community. In J.W. – a case where a group home of fewer than eight persons that included “newly-released” mental patients was denied the special permit required by the city ordinance – the Court of Appeals, Ninth Circuit, held that the benefits of the ordinance restricted access to housing and rehabilitative services for persons with disabilities. Furthermore, the court held that while these are not fundamental rights they are essential to individuals' full participation in society.

When it comes to the dispersal of group homes throughout the city no unified precedent exists. In Familystyle (1991)­­―a case where the City of St. Paul (Minn) denied a permit renewal for three additional houses in an existing campus of group homes clustered across a one-and-a-half block area, and with capacity for 119 to 130 persons with disabilities – the United States Court of Appeals, Eighth Circuit, held that state and municipal dispersal requirements for group homes did not violate the Fair Housing Act and did not result in a disparate impact on and discriminatory treatment of persons with intellectual disabilities. The court held that the licensing requirement reflected the goal of the deinstitutionalization of persons with disabilities, a philosophy aimed at allowing all persons to live in stable, affordable housing in settings that maximize community integration and opportunities for acceptance. The goals of non-discrimination and deinstitutionalization were held to be compatible. Dispersal requirements are designed to ensure that persons with intellectual disabilities are not forced to live in enclaves of treatment facilities that would replicate and thus perpetuate the isolation that results from institutionalization. Through such dispersal requirements the state seeks to place persons with intellectual disabilities in the least restrictive environment possible and guarantee that residential programs are geographically situated in locations where residential services are needed, where they would be a part of the community at large, and where access to other necessary services is available.

On the contrary, in Horizon – a case where a city ordinance imposed a distance requirement of 1,000 feet for group homes within the township – the District Court of the Eastern District of Pennsylvania within the Third Circuit held that: (1) the city’s ordinance was facially invalid due to creating an explicit classification based on handicap with no rational basis or legitimate governmental interest; (2) preventing the clustering of people with disabilities to promote integration into a community did not constitute adequate justification; (3) the ordinance was also invalid on the grounds of discriminatory intent and discriminatory impact; and (4) the ordinance violated the equal protection clause.

The District Court concluded that the city had no rational basis for imposing a distance rule on people with disabilities while allowing biological families and five or fewer unrelated people without disabilities to live wherever they wished to do so. The court dismissed the rationale offered - according to which group homes are required to be located outside of 1,000 feet from each other - that the city aimed at avoiding a potential clustering of homes for people with intellectual disabilities to promote their integration into the neighborhood. The court held that it had not been proven that by preventing clustering the city was actually promoting integration. On the contrary, the court found that the distance rule affected the entire range of housing options available to persons with disabilities. The rule can also limit access to essential community and personal services for citizens with disabilities because it has the potential to preclude homes with access to community resources because other homes are already located within the distance.

The court in Horizon upheld the right of persons with disabilities to decide where they want to live, on an equal basis to others, and that zoning officials and regulations should not make these decisions for them. The court found no evidence establishing that people with disabilities living close to one another is per se detrimental, and held that each situation requires an independent evaluation. It is not an easy issue and certainly a black and white solution will not fit the best interest of inclusion in the community; perhaps the solution in Horizon better fits the question, by assessing every case within its context and its surrounding community.

Group homes can foster and ensure the Right to Live Independently and to Be Included in the Community for those with intellectual disabilities (United Nations, 2006, art. 19). This right entails two separate but correlated elements: independence and inclusion. On the one hand, living independently can mean several different things to different persons with intellectual disabilities. From a general perspective it means to live, with the support needed, by him or herself; to have the opportunity to choose their place of residence, and where, how, and with whom they live, to not be obliged to live in a particular living arrangement, and that any such arrangement fits their needs and desires to the greatest extent possible.

Some of the mentioned critics of group homes point out the risk that such living arrangements may simply become institutional settings, albeit on a smaller scale. These would then constitute places where persons with intellectual disabilities are controlled, isolated and segregated, thereby violating their Right to the City. Many activities and strategies might be implemented in order to foster independence and avoid institutionalization through home or community-based services. For Mollica (2009), at least three elements should be present when fostering independence. First, living quarters should preferably be private rooms, not shared rooms, and control over these should be promoted and protected, for instance, by allowing inhabitants to furnish, decorate and change their quarters. Second, persons with intellectual disabilities must have unscheduled activities and access to common areas and services, obviously under shared rules of coexistence. Third, assistance should be provided for coordinating and arranging activities outside the group home.

In order to be included in the community, those with intellectual disabilities should constitute valuable members of their communities. They should not only be present and recognized, but also effectively take part in what the community is and can be, as well as in the opportunities and services it offers. Their life projects must not be isolated or segregated but entangled with those of others. They should be active members of their families and be able to form a family, as well as have connections and affective ties with other members of the community. Group homes should not only focus on providing care, protection and rehabilitation services, but should also promote meaningful daily activities for persons with intellectual disabilities according to their desires and preferences. For Fesko (2012), additional attention should be placed on maintaining social relationships beyond the group home and the family, developing community-based non-work activities, volunteering, and participating in lifelong learning, among others.

Group homes can foster transitions into other independent-living arrangements

Through the services outlined in §1915(c), and some additional activities, group homes can foster, enhance and support transitions into other independent-living arrangements. Bearing in mind that services and support must be tailored and adjusted to each person’s needs, preferences and desires, group homes and independent-living arrangements are not completely opposed to or exclusive of one another. In fact, both can constitute positive environments for ensuring the Right to the City for those with intellectual disabilities.

According to Mollica (2009) states use at least three approaches to pay for services in residential care settings under Medicaid: §1915 (c) home and community-based services (HCBS) waivers, the Medicaid personal care state plan option, and §1115 demonstration programs, such as Money Follows the Person Program (MFP). Thus, there are different options for funding transition services, although no national policy exists on the matter.

§1915(c) is not unfamiliar to persons with intellectual disabilities who are transitioning into other independent-living arrangements. A complex set of services is available through the waiver to help individuals to achieve this. Furthermore, group homes, their personnel and the organizations running them can indeed be part of the related processes. Transition services are aimed at ensuring the continuity of services for individuals who are returning to the community from a congregate setting, be it institutional or non-institutional (CMS, 2014). This includes services such as assisted living services, a live-in caregiver and community transition services, among others.

Assisted living services comprise personal care and supportive care, available through the waiver to group homes that the person might need in the new living arrangement ( CMS, 2014). A live-in caregiver includes “payment for the additional costs of rent and food that can be reasonably attributed to an unrelated live-in personal caregiver who resides in the same household as the waiver participant” (CMS, 2014, p. 162). Community transition services “are non-recurring set-up expenses for individuals who are transitioning from an institutional or another provider-operated living arrangement to a living arrangement in a private residence where the person is directly responsible for his or her own living expenses” (CMS, 2014, p. 166). This includes security deposits; essential household furnishings and moving expenses; set-up fees or deposits for utility or service access, including telephone, electricity, heating and water; and moving expenses (CMS, 2014). Other services available through §1915(c) that are useful when fostering independent-living arrangements are home accessibility adaptation, vehicle modification, non-medical transportation, specialized medical equipment and supplies, assistive technology, skilled nursing, and private duty nursing (CMS, 2014).

MFP programs present an interesting strategy that can shed some light onto group homes and the transition processes fostered by them. Such programs often directly relate to group homes, while at other times group homes and their personnel oppose and hinder them. As described by Coffey (2009), “Money Follows the Person encompasses a number of state and federal efforts to help individuals choose where they receive services, and had helped individuals to make transitions from nursing facilities to the community maintaining their Medicare coverage”. These were first established in 2005 by the Deficit Reduction Act (Denny-Brown, Lipson, Kehn, Orshan, & Stone, 2011). In 2007, CMS awarded MFP demonstration grants to 30 states and the District of Columbia, and in 2010 Congress increased total MFP program funding to $4 billion, which allowed CMS to award grants to 13 more states in 2011 and 3 more states in 2012, making a total of 47 grantees. As reported by Denny-Brown et al. (2011) during the first half of 2013, 39 % of those who transitioned chose to live in an apartment, 35 % percent moved to a home, about 14 % percent chose to live in group home settings, and about 9 % percent chose to live in an apartment in a qualified assisted-living facility.

Transitions through MFP programs, even where successful, have found different barriers and challenges, the acknowledgement of which might be useful for group homes and organizations trying to develop and foster those kinds of processes either with a MFP program, with §1915(c) services or with other funding. Three elements have been pointed out by Reinhard as essential for successful transitions: people, resources and extra services available to MFP beneficiaries (Reinhard, 2012). Transitioning is a labor-intensive process that requires patient, skilled and creative people. They must have good interpersonal relationships with the relevant individual, develop person-centered planning and have a good knowledge of community resources. There is a need for resources to pay different expenses related to the moving process, while resources may be available for funding for extra services that might be needed, such as overnight companions, additional hours for a personal care worker and peer support to help people adapt to life outside an institution. Other potential barriers include locating affordable and accessible housing within the community, as well as dealing with institutions, nursing facilities and organizations that see the transition process as a “loss of customer” and therefore oppose or are non-supportive of the process (Coffey, 2009).

Group homes should promote a transition into independent-living arrangements when such a process is desired and is suitable for persons with intellectual disabilities. The Right to the City can be ensured either through a group home setting or through another independent-living arrangement. As Walker states, some organizations running group homes have been developing and supporting transition processes and this therefore implies organizational transformations (Walker, 2012). This has generated a return to person-centered planning and a shift in power and control over lives. Organizations have also helped and supported transitioning individuals with intellectual disabilities who have taken advantage of their expertize, personnel, facilities and funding. As more positive possibilities for inclusion in the community become available for persons with intellectual disabilities, more possibilities for their Right to the City to be protected and enjoyed.

Conclusion

Persons with intellectual disabilities’ Right to the City encompasses the ultimate idea of freedom: the possibility of being themselves, different from one another, and able to make the very simple and basic decisions involved in daily living. This includes the idea not only of having a protective and empowering private place, but also of being part of the community, recognized as a valuable member by their peers, present in public spaces and able to use public facilities, able to take advantage of social opportunities, and to be part of meaningful social interactions. Besides providing health and rehabilitative services through a wide range of activities focused on self-determination, empowerment and inclusion in the community, group homes can foster and ensure the Right to the City at large.

However, within this complex and long-lasting process of ensuring the Right to the City one last element remains. The Right to Participate in the Political and Public Life, as enshrined in the CRPD, art. 29 and read in light of the Right to the City, requires that persons with intellectual disabilities have an impact upon the political community within the city, namely, the ward, the district and the city itself, both politically and publicly: Publicly, by promoting an environment in which persons with disabilities can effectively and fully participate in the conduct of public affairs, mainly by participating in organizations and associations concerned with local and city affairs; Politically, by being able to vote responsibly, and with the required support, being able to hold office and perform public functions.

Acknowledgments

Research for this paper was supported in part by the Disability Rights Scholarship Program, which is funded and administered by the Open Society Institute (OSI). The opinions expressed herein are the author’s own and do not necessarily express the views of OSI.

The author wishes to thank Professor Robert Dinerstein at American University Washington College of Law for his reviews and suggestions.

References

Notes

^[1] In contrast to the rationale of the U.S. Supreme Court in City of Cleburne, Tex. v. Cleburne Living Center, 473 U.S. 432 (1985), persons with disabilities might not be completely invisible to social and economic policies and they might find available some social benefits. However, from the broader perspective of city planning and social participation, they remain invisible or at least under-represented.

^[2] See United Nations (1948, art. 25; 1966, art. 11).

^[3] See Horizon House Developmental Services, Inc. v. Township of Upper Southampton et al., 804 F. Supp. 683, 698 (1992).

* Research article.

Author notes

^aCorresponding author. lcorrea@saldarriagaconcha.org

Additional information

Cómo citar este artículo:: Correa-Montoya, L. (2018). Right to the city and group homes: fostering social inclusion for persons with intellectual disabilities. Cuadernos de Vivienda y Urbanismo, 11(21). https://doi.org/10.11144/Javeriana.cvu11-21.rcgh

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