Natalie M. Chin∞
Adults with intellectual disabilities who live in group homes possess the same complex range of sexual desires and identities as all adults do. However, in group homes throughout the United States, these adults are denied the ability to express their sexuality. This Article addresses the systematic failure of group homes to modify punitive and overprotective policies and to provide services related to sex and intimacy, creating an environment of sexual isolation. Although legal scholars have explored the complexity of disability and sexual consent capacity and examined sexual rights in the context of institutionalized care, they have yet to explore the ramifications of policies and practices within group homes under federal disability rights law. This Article takes on that task and concludes that group homes have an affirmative duty to support intellectually disabled adults in exercising choices around sex and intimacy.
In particular, this Article argues that Olmstead v. L.C. ex rel. Zimring and its mandate for community integration under Title II of the Americans with Disabilities Act provides the framework to challenge the sexual isolation of group home residents as disability-based discrimination under the ADA’s older integration mandate-sibling, Section 504 of the Rehabilitation Act. Some courts have begun to expand the reach of the integration mandate beyond the physical walls of confinement. It is through this lens that sexual rights can rise from the shadows as an essential aspect of full community integration alongside supports that include employment, education, and skills for daily living. The Article concludes by proposing reasonable modifications that group homes may undertake to avert sexual isolation, striving to balance the sexual rights of residents against the risk of exploitation and abuse that may arise in intimate relationships. A key modification would require group homes to create or adapt policies and procedures that begin to dismantle the bias, paternalism, and ableism that drives group-home decisions and perpetuates the sexual isolation of adults with intellectual disabilities.
What is a life devoid of sex and intimacy, where “home is not a place but simply an irrevocable condition”1 of presumed incapacity to engage in decisions related to one’s sexuality? An estimated 184,699 intellectually disabled individuals live in a private group home setting.2 For many intellectually disabled adults living in group homes3 throughout the United States, a life without sex and intimacy is the status quo. Twenty-eight years after the passage of the Americans with Disabilities Act, persons with intellectual disabilities4 have yet to achieve full community integration because of a form of discrimination that Elizabeth Emens describes as “intimate discrimination at a structural level.”5 Michael Perlin, a leading scholar on sexuality and the rights of individuals with disabilities, has long argued that the “suppression of all sexual desire and action is, in fact, a form of social torture” for disabled individuals who reside in institutionalized care.6 This Article presents a novel framework for analyzing and countering this form of social torture, this intimate discrimination, through the lens of federal civil rights law. This Article describes the ways in which group homes erase the sexuality of individuals with intellectual disabilities through discriminatory policies and outlines how a systematic failure to provide community-based treatment and services around sexuality result in these individuals’ sexual isolation.
This Article argues that Olmstead v. L.C. ex rel. Zimring7 and Title II of the Americans with Disabilities Act8 can be applied to challenge the sexual isolation of group homes residents under Section 504 of the Rehabilitation Act.9 Although disability scholars are attuned to the harms that intellectually disabled adults experience in relation to their sexuality, scholars have yet to situate this problem in the landscape of federal civil rights law. The issue of whether group homes have an affirmative duty under federal disability rights law to support intellectually disabled adults in exercising choices around sex and intimacy broadly impact the lives and identities of the thousands of adults in the United States who reside in group homes.10
Sexual isolation manifests in an environment cultivated by group homes where overprotective and punitive policies and lack of access to sexuality services11 unjustifiably suppress the sexual rights of residents.12 Group homes deny their residents opportunities related to gaining knowledge and information about sex, intimate relationships, marriage, and starting a family. This denial results in a form of sexual isolation, which, in turn, stymies the ability of adults with intellectual disabilities to develop the skills necessary for healthy sexual and intimate relationships.13 In addition, sexual isolation further perpetuates an environment where intellectually disabled individuals are more susceptible to sexual abuse and exploitation.14
Sexual isolation also manifests through a group home’s decision to indefinitely police the sexual decisions of consenting adults who wish to engage intimately. In an article in the Minnesota Star Tribune, several group home residents discussed the limitations placed on their sexual activity by group home staff members.15 One resident discussed a ninety-minute time limit given by the group home on when he can engage privately with his girlfriend in his room.16 For the first year of the relationship, visits together were supervised.17 Now, he must seek permission from group home staff for a night alone with his girlfriend. He explains why this night alone is so important: “I want to wake up in the morning and have someone there by my side and feel happy—just like everyone else.”18
In more restrictive instances, a resident’s right to consent to sex may be arbitrarily denied, resulting in a potential lifetime without access to sexuality services or the right to engage in sexual intimacy in their own home. Consider the case of Julia R.19 Julia R. is in her early thirties and is sexually active. She has an intellectual disability and moved into a group home several years ago after becoming estranged from her family. She is friendly, laughs easily, and enjoys shopping with her friends. Julia R. has had a boyfriend for over a year and tries to spend as much time with him as she can. She is aware and knowledgeable of sexually transmitted diseases and decided to have an intrauterine device implanted as a form of birth control. She lived in the same supervised group home with eight other residents for several years and desired to live more independently in a non-group home setting.
One afternoon, Julia R. was speaking to staff at her group home and expressed her excitement about one day getting married and having a baby. The staff grew concerned, asking Julia R. questions about whether she understood how to care for a baby. Feeling that she did not fully grasp the gravity of caring for a baby, the staff member suggested to the group home operators that Julia R. undergo a Sexual Consent Assessment.20 The Sexual Consent Assessment contained a series of questions pertaining to basic anatomy, sexual relationships, protection from sexual abuse or exploitation, and safe sex practices. Julia R. met with a group home employee who asked her a series of questions, which she answered as follows:
Evaluator: What does it mean to be married?
Julia R.: You love that person and want to be with them for a long time.
Evaluator: Who should never touch your private areas?
Julia R.: A stranger.
Evaluator: What can stop pregnancy?
Julia R.: A condom.
Evaluator: How would you feel if someone touched you and you didn’t want them to?
Julia R.: Scared.
Evaluator: Who can you tell if the touch caused bad feelings?
Julia R.: Friend or a nurse.
Shortly after the assessment, the group home deemed that Julia R. lacked the capacity to consent to sexual activity. The group home did not have guidelines or policies in place to provide Julia R. with information concerning issues of marriage and family or procedures that would allow her to challenge the sexual consent determination. Instead of deepening their curiosity and exploring Julia’s comprehension to see how they could accommodate her, the group home silenced Julia R. by taking away her capacity. As a result of this determination, the group home kept a close eye over Julia’s whereabouts to ensure that she did not have the opportunity to engage in any sexual activity with her boyfriend.
On repeated occasions, Julia R. told the group home that she did not want staff watching over her when she was with her boyfriend, and she continued to express her desire to marry and have children. She repeatedly asked the group home to reconsider its decision, without success. The group home ignored Julia R.’s many requests for information, and did not provide a justification for its decision nor offer services to support her desire to marry and have a family. It took one year of legal advocacy for Julia R. to regain her sexual consent status and to receive the services she requested.21
Julia R.’s case is not atypical.22 It represents the ease with which group homes can limit the sexual rights of residents and restrict access to sexuality services, and it raises the question of whether a life devoid of opportunities for sex and intimacy—where sexual expression is systematically suppressed and supportive services are withheld in matters related to starting a family or learning how to navigate an intimate relationship—is a life truly integrated into society.
Olmstead and its application of Title II of the ADA23 provide the framework to challenge the sexual isolation of group home residents as disability-based discrimination under the ADA’s older integration integration-sibling, Section 504 of the Rehabilitation Act.24 The “integration regulation”25 under Title II of the ADA provides that a “public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.”26
The ADA modeled the integration regulation, which is at the heart of both Title II and the Olmstead argument, after 28 C.F.R. § 41.51(d) of Section 504 of the Rehabilitation Act,27 which provides that recipients of federal funding “shall administer programs and activities in the most integrated setting appropriate to the needs of qualified handicapped persons.”28 The reach of Title II of the ADA is limited to public entities, making Section 504 the legal mechanism available to challenge the unjustified isolation of disabled persons in private settings, such as group homes, that are not operated by state or local governments.29
Following Olmstead, Courts consistently analyze integration claims brought under Section 504 and Title II together, focusing on Title II of the ADA for guidance.30 Prior to Olmstead, however, “there was no settled judicial or administrative construction of Section 504 on the question” of whether it applied to “the unjustified isolation of persons with disabilities.”31 Indeed, the Olmstead plaintiffs did not assert a Section 504 claim, leaving this question open.32 Where Section 504 is silent as to the context under which the integration regulation applies,33 courts have looked to the ADA—with its clear remedial purpose of ending invidious discrimination—for guidance, including when to apply the integration regulation to non-governmental entities.34
In Olmstead, two women challenged the decision of a state psychiatric facility to continue their treatment in the confined setting of the hospital despite a determination by treating physicians that a community-based treatment program would be appropriate for their continued care.35 The plaintiffs, Lois Curtis and Elaine Wilson, both dually diagnosed with intellectual and psychiatric disabilities, were voluntarily admitted to a state hospital for mental health treatment; the hospital subsequently confined both women to the psychiatric unit.36 Each desired to move from the hospital to a community-based setting where they would continue to receive appropriate treatment.37
Curtis and Wilson argued that, once their treating physicians deemed a community-based placement appropriate for their continued treatment, defendants’ decision to require their confinement to institutionalized care violated Title II of the ADA.38 Since “most of the ADA/mental disability case law” that preceded Olmstead “focused on questions of professional licensure and examinations and on the range of accommodations necessary in employment situations,” Olmstead provided the United States Supreme Court with its first meaningful opportunity to examine a regulation that had received little attention since the 1990 enactment of the ADA.39
To this end, the Supreme Court held that the “unjustified isolation” of individuals with intellectual disabilities constituted discrimination under Title II of the ADA—this is commonly referred to as the Olmstead integration mandate of the ADA.40 The mandate requires states to provide community-based treatment in the most integrated setting appropriate to the needs of the individual as a reasonable modification to avert unjustified isolation.41 Treatment professionals must deem the “community placement . . . appropriate” and the individual must not object to the placement.42 A state may avoid its affirmative duty under Title II only if the modification would fundamentally alter the nature of the State’s program, service or activity.43
Olmstead spurred deinstitutionalization policies that were already gaining ground since the 1970s as large-scale institutional settings that once warehoused intellectually disabled individuals steadily closed and community-based settings emerged.44 Following Olmstead, however, the legal arsenal available to challenge the unjustified institutionalization of intellectually disabled individuals strengthened; advocates now had the support of federal disability rights laws and a key Supreme Court decision to challenge how far the deinstitutionalization movement could go. Olmstead fostered the creative thinking of advocates to strategize on how the ruling could be applied beyond the context of deinstitutionalization.
Today, the movement for deinstitutionalization is no longer focused on getting people with intellectual disabilities out of institutions, but in utilizing Title II and Section 504 to compel states and private entities to provide adequate and appropriate community-based services to avert the risk of segregation and isolation within the community.45 In 2010, to mark the eleventh anniversary of Olmstead, the Obama Administration launched “The Year of Community Living” tasking federal agencies to more vigorously enforce Title II of the ADA.46 DOJ has filed, joined, or participated in over fifty Olmstead challenges since then.47
As Olmstead jurisprudence expanded, one question lingered: What qualifies as an “integrated setting” in compliance with the Olmstead integration mandate? Largely as a result of successful litigation to enforce the Olmstead integration mandate, the modern definition of integrated setting began to take shape. Post-Olmstead litigation gradually established that “integrated setting” encompassed the right of intellectually disabled persons to access opportunities and services that are available to persons without disabilities. As a result, individuals with intellectual disabilities have gained greater access to community-based services, including housing,48 mental health support,49 educational opportunities,50 and employment support;51 and have continued to achieve the meaningful community integration envisioned by Title II and Olmstead.
As discussed, supra, the definition of integrated setting continues to expand with the growing Olmstead jurisprudence to reflect a fuller conception of community integration—the right to self-determination, access to choice and personal development, and the opportunity to interact in all realms of human activity. It is through this holistic definition of community integration that sexuality must be considered. The movement for community integration fails to fully address the importance of sexuality in the lives of intellectually disabled individuals. Sexuality is critical to these goals but remains disregarded or stigmatized, largely due to the presumption that adults with intellectual disabilities are too disabled to engage in intimate or sexual relationships.52
In exploring the sexual rights of group home residents, the question here is not whether adults with intellectual disabilities have a fundamental right to engage in consensual sexual conduct.53 As discussed in Part IV.C, infra, the current application of the integration regulations of Title II and Section 504 is based on the notion that disabled persons should have the opportunity to develop and thrive as full human beings with community-based services and other supports in an integrated environment that is tailored to their needs. The integration regulations, for example, do not hinge on whether the person has the fundamental right to work, to have an education, or to interact with non-disabled persons in the community; sexuality is not detached from this notion.54
The question is, then, whether group homes provide intellectually disabled individuals with the opportunity to engage in matters related to sexuality through staff support and community-based services that, in turn, strengthen opportunities to create, maintain, and form intimate relationships like individuals without disabilities.55 It is with this nuanced understanding of the meaning of an integrated setting that this Article analyzes sexual isolation as disability-based discrimination in violation of Section 504.
This analysis also does not overlook the need to protect adults with intellectual disabilities from sexual exploitation and abuse, but argues that the pendulum has swung too far when group homes presumptively take punitive steps in response to a resident’s sexual expression. The Article presumes that adults with intellectual disabilities have the capacity to engage in sexual activity with supports.56 This presumption does not negate—and is not mutually exclusive of—the need for persons with intellectual disabilities to receive varying degrees of supports and protection to ensure that sexual choices are consensual and free from abuse and exploitation.57
Part II gives a brief history of individuals with intellectual disabilities and sexual rights and examines the scholarship in this area of law. This Section further explores issues related to capacity and consent. Part III discusses the interplay of group homes and states in realizing community integration and the relationship between overprotective group home policies and sexual abuse. Part IV lays the framework to establish that sexual isolation constitutes a form of disability-based discrimination in violation of Section 504. The Article concludes by challenging the fundamental alteration defense against a claim of sexual isolation under the integration regulations and proposes reasonable modifications that group homes may undertake to avert sexual isolation. The proposed modifications strive to balance the sexual rights of residents against the risk of exploitation and abuse that may arise in intimate relationships with the need to uproot deeply held ideologies based on bias, paternalism, and ableism that drive group home decisions in matters of sexuality.
II. Individuals with Intellectual Disabilities and Sexual Rights
The administration of punitive and overprotective policies toward sexuality and the absence of sexuality services are intrinsically related to—and rooted in—disability-based discrimination that runs deep in the legal and socio-political history of the United States. This Part first discusses the history of sexuality and adults with intellectual disabilities. The discussion then explores how scholars approach the issue of sexual rights and intellectually disabled individuals, analyzing the strongly-held ideology of presumed incapacity as well as issues of capacity and consent, and proposes a theory for how to support the sexual rights of adults with intellectual disabilities in making choices related to sex and intimacy.
A. Historical Treatment of Individuals with Intellectual Disabilities and Their Sexual Rights
Now I am preparing a list of young women for operation. We have not fully decided whether to simply cut and tie the tubes, and thus isolate the ovaries, or remove the ovaries, and see if that will diminish sexual excitement. I rather think we will do the last named operation, or perhaps try each method on a part of the girls and compare results . . . . Our Dr. Frost, who has charge of our women’s side, believes the removal of the ovaries, may in time diminish, or delay, sexual appetites.58
Historically, states regulated the sexuality of individuals with intellectual disabilities through the implementation of policies that served two primary purposes: to protect society by containing the “defective strain” that gave “rise to feeblemindedness and sexual promiscuity”59 and as a form of paternalism aimed at “rescu[ing] women from becoming victims of men’s lust and their own ‘weakness of self-control.’”60 States initiated policies of forced sterilization, segregation of institutionalized individuals by sex, and prohibition of marriage.61
Individuals with intellectual disabilities were labeled as “idiots” and “feeble-minded,” with women particularly vulnerable to sexual control.62 Women were early targets of what would become a sweeping global eugenics movement that garnered strong early support between 1890 and 1920.63 The goal of the eugenics movement was to create a “superior human stock” by eradicating the reproduction of undesirables, who would perpetuate cycles of “poverty, crime and vice, unwanted children, insanity, and feeblemindedness.”64
Wary of the constitutionality of such laws, states initially tiptoed carefully around enacting compulsory sterilization legislation.65 Indiana passed the first involuntary sterilization law in 1907.66 This wariness shifted following the 1927 United States Supreme Court case Buck v. Bell,67 which upheld Virginia’s forced sterilization statute. Under Virginia law, the superintendent of a state institution for “[e]pileptics and the [f]eeble minded” had authority to undertake the involuntarily sterilization of residents.68 Justice Oliver Wendell Holmes, a fervent supporter of eugenics, wrote the opinion for the Court. In a short majority opinion, he determined that it was the duty of society to “prevent those who are manifestly unfit from continuing their kind,” and ended the opinion with his now infamous words: “Three generation of imbeciles are enough.”69 The United States’ eugenics movement resulted in over thirty states adopting involuntary sterilization statutes.70
Controlling the sexuality of women with intellectual disabilities was another driving element behind forced sterilizations. Female residents living in institutions endured pervasive oversight by institution staff to ensure they remained sexually virtuous.71 In 1917, Dr. Lewis Terman, a respected Stanford psychologist and pioneer of the IQ test, wrote “[t]hat every feeble-minded woman is a potential prostitute.”72 His argument rested on ethics, claiming that “[m]orality cannot flower and fruit if intelligence remains infantile.”73
The first reported sterilization in a public institution for people with intellectual disabilities occurred in 1892.74 The procedure involved the removal of a young woman’s “procreative organs,”75 done behind a wall of institutional secrecy when no state had yet enacted compulsory sterilization statutes.76 Lauding the success of this procedure, the overseer of the facility, Dr. Isaac Kerlin, remarked about the young woman,
When I see the tranquil well ordered [sic] life she is leading, her industry and usefulness in the circle in which she moves, and know that surgery has been her salvation from vice and degradation, I am deeply thankful to the benevolent lady whose loyalty to science and comprehensive charity made this operation possible.77
The United State Supreme Court has not directly overturned Buck v. Bell. The biases that drove this nearly century-old decision continue to impact adults with intellectual disabilities in matters of love, intimacy, and family planning. In a recent Iowa decision, the guardian and mother of a twenty-two-year-old man with intellectual disability had her son sterilized without his consent because he was in a relationship with a woman and had admitted to having sex.78 The son petitioned the court to remove his mother as guardian.79 While the court questioned the constitutionality of the guardianship statute—maintaining that the mother should have asked permission from the court before having her son sterilized—it upheld the mother’s right to remain as guardian of her son and did not rule on the constitutionality of the statute as applied to forced sterilization.80
In Vaughn v. Ruoff, a case before a federal appeals court, child welfare agency workers told a parent with intellectual disabilities that if she consented to sterilization she would get her children back.81 Even though the mother underwent a tubal ligation, the child welfare agency moved forward to file a termination of parental rights action.82 The U.S. Court of Appeals for the Eighth Circuit upheld the lower court’s decision (i.e., that the child welfare agency workers violated the parent’s due process rights by coercing her to undergo sterilization), but cited to Buck v. Bell to note that “involuntary sterilization is not always unconstitutional if it is a narrowly tailored means to achieve a compelling government interest.”83
The widely held belief that adults with intellectual disabilities cannot safely express themselves sexually is guided by ableist attitudes that perpetuate discriminatory laws and policies.84 Ableism is a form of discrimination or oppression against disabled individuals that “can take the form of denial of rights and access and the perpetuation of stigma, hatred, and othering.”85 These ideologies are historically rooted in structural bias and oppression, wherein persons with intellectual disabilities are viewed as sexual predators or perpetual children who require protection and are incapable of providing a safe and nurturing environment to raise a child.86
As documented by a survey of eighty-five adults with intellectual disabilities and caregiver perceptions about sex education, “[t]he individual with [intellectual disabilities] has been denied their right to sexual feelings and has been pictured as a perpetual child who is protected. Society holds to the myth that the individual with ID has not developed an interest in their own sexuality or the sexuality of others.”87 Professor Perlin describes the societal attitudes toward sexuality and persons with disabilities as follows:
Society tends to infantilize the sexual urges, desires, and needs of the mentally disabled. Alternatively, they are regarded as possessing an animalistic hypersexuality, which warrants the imposition of special protections and limitations on their sexual behavior to stop them from acting on these “primitive” urges. By focusing on alleged “differentness,” we deny their basic humanity and their shared physical, emotional, and spiritual needs. By asserting that theirs is a primitive morality, we allow ourselves to censor their feelings and their actions. By denying their ability to show love and affection, we justify this disparate treatment.88
In present day, explicit eugenics policies are a shameful chapter in history. Yet the power to limit the sexual rights of adults with intellectual disabilities is arguably driven by many of the same views that propelled the eugenics movement of the early twentieth century.
B. Scholarship on the Sexual Rights of Individuals with Intellectual Disabilities
Scholarship explores the issue of sexual rights in the context of state-run institutionalized settings such as nursing homes and hospitals, and focuses primarily on persons with mental illness and elderly individuals with dementia or similar cognitive limitations.89 The issue of sexuality and disability is also examined with an emphasis on questions of sexual consent capacity and sexual autonomy.90 The literature in this area often fails to distinguish the unique challenges of individuals with intellectual disabilities in accessing sexual rights.91 As one scholar noted, the distinction between intellectual disability and other forms of limited mental capacity such as dementia “matters with respect to assessing sexual decision[making].”92
Scholars have yet to explore the sexual rights of individuals with intellectual disabilities who live in private community-based settings that may resemble institutionalized care, such as group homes.93 When the actor causing harm is not the state but a private entity that provides housing to intellectually disabled adults and plays an instrumental role in the administration of community-based services, what is the remedy and how is it sought? Michael Perlin and Allison J. Lynch recognized the possibility that the ADA could survive a challenge to overprotective policies of institutionalized settings “that prohibit all patients from meaningful, voluntary sexual interaction,”94 but this analysis remains unexplored.
In examining the issue of sexual isolation as a violation of the integration mandate, I follow Leslie Salzman’s theory that conceptualizes the integration mandate of Title II of the Americans with Disabilities Act as interpreted in Olmstead v. L.C. ex rel. Zimring95 for disabled individuals who are subject to a form of segregation outside of the physical confines of an institution.96 In her Article, Salzman establishes that guardianship is a presumptive violation of the Olmstead integration mandate under Title II of the ADA, soundly suggesting what cases only recently determined: “integration mandate cases need not be read to require some connection, however tangential, to isolation in a physical institution as a requirement for bringing an integration mandate challenge.”97 Salzman reasoned, “these cases can be read to go beyond the paradigm of physical isolation in an institution to support the general requirement of the integration mandate.”98
This Article expands on Salzman’s theory by drawing from Olmstead jurisprudence to establish a basis for which the ADA’s integration-mandate relative, Section 504 of the Rehabilitation Act, may be used to challenge the unjustified isolation of persons with intellectual disabilities and the denial of their sexual rights by group homes. This argument attempts to further expand the definition of what qualifies as an “integrated setting” under the ADA and Section 504. The hoped-for effect is twofold: on the one hand, it will prohibit overprotective and punitive policies that discriminatorily limit sexual rights; on the other, it will require access to community-based opportunities that will enable intellectually disabled individuals to achieve full community integration in matters related to sex and intimacy.99
C. Uprooting the Presumption of Incapacity
In overcoming the deeply held ideology of presumed incapacity, a different lens must be taken up by group home operators, one that allows them to view intellectually disabled adults as sexual beings capable of engaging safely in matters of sex and intimacy. This Part bases its framework on a presumption that, with support, adults with intellectual disabilities have the capacity to consent to matters of sex and intimacy. This presumption is based on two notions: first, the established presumption of capacity that permeates American law and jurisprudence in making fundamental life decisions100 such as family planning,101 parenting,102 health care,103 marriage,104 and opposition to guardianship.105 This presumption is equally applicable in the context of intellectually disabled individuals and their choices around sex and intimacy. Second, this framework rests on a belief that capacity is not a fixed state, but a fluid stream that can strengthen or diminish based on a number of factors; in other words, capacity fluctuates in different contexts with different people with differing abilities.106 For example, an individual may have capacity to make health care decisions, but may lack capacity to enter into a contract. Or a parent with an intellectual disability may lack capacity to care for their child during a period of time, but gain the skills and tools to enhance any deficits that inhibited this ability.107 The lack of sexuality supports inhibits intellectually disabled adults from gaining the skills necessary “to make informed choices leading to healthy relationships,”108 leading to sexual isolation.109
Group home employees are often the first to question a resident’s capacity in matters related to sexuality.110 The issue commonly arises when a resident expresses a desire to exercise choices in their sexuality, whether it is to start a family and get married, as in Julia R.’s case, or to date or engage in a sexual relationship.111 Group homes are licensed and receive state, local and federal funding to administer community-based services to their residents, but do not have any oversight mechanism to ensure respect of the resident’s sexual rights and choices.112 Fear of abuse and exploitation of individuals with intellectual disabilities, “an overarching paternalistic set of concerns about caretaker liability,”113 and the historically cemented presumption that intellectually disabled individuals lack capacity in matters of sexuality drive policies that indiscriminately police the sexuality of those in group homes.114
The notion that capacity may be enhanced in different areas of one’s life with appropriately tailored supportive services provides the foundation for the accommodation/modification mandates under the ADA and Section 504. Supports and services focused on strengthening adaptive functioning “have proven effective in increasing the mental capacity” of individuals with intellectual disabilities, including in areas of sexual consent capacity.115 Judge Marsha S. Berzon of the Ninth Circuit Court of Appeals recognized the danger in viewing intellectually disabled adults as either having or lacking the capacity to consent to sexual conduct. In her dissenting opinion in Anderson v. Morrow, she expressed the view that:
[t]his binary view of mentally retarded individuals . . . might well be an unconstitutional imposition on their sexual liberty. Despite the lack of a consistent clinical definition of what constitutes a ‘valid’ consent, there is clear consensus among experts in the field of mental retardation that mentally retarded individuals experience sexual desire and can meaningfully consent to sex in some situations.116
Age, cognitive abilities and many other factors affect the fluidity of capacity,117 which is likely why states have considerable trouble defining it in criminal and civil contexts alike.118 In the criminal law context, states like Alaska, California, Nebraska, North Dakota, and Utah have adopted the more narrowly focused “nature and consequences” test.119 This test requires the individual to understand the sexual nature of the act itself as well as potential adverse consequences, such as unplanned pregnancy or sexually transmitted infections.120 In contrast, states like Illinois, Michigan and New York adopt a an approach that is sometimes referred to as the “morality standard,” which requires an understanding of the nature and consequences of the sexual act itself and of its “moral quality,”121 while New Jersey and Arizona’s “nature of the conduct” test merely requires that the individual understand the sexual nature of the conduct.122
In the civil context, state guardianship laws in the United States, for example, “start with the presumption of capacity”123 before any judicial action may be taken to remove legal decision-making rights from a person subject to the guardianship proceeding. In guardianship, the person who seeks appointment as the legal guardian must overcome the presumption that the person who is subject to the guardianship has capacity. This presumption of capacity is based on standards that vary state-by-state, which have included as many as three different or combined tests to determine capacity: “[d]isabling condition[, f]unctional behavior . . . [, and c]ognitive functioning.”124 If the presumption of capacity is overcome, guardianship is granted and the individual now under guardianship loses some or all of their legal decision-making powers on matters that may include where to live, with whom to socialize, and whether to marry and have children.125
The Convention on the Rights of Persons with Disabilities (CRPD) also recognizes the right of “persons with disabilities” to “enjoy legal capacity on an equal basis with others in all aspects of life,”126 building on the preamble which “recogniz[es] the need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support.”127 Although not ratified by the United States, the CRPD influences legal commentators and even some courts,128 as well as entities such as the Uniform Law Commission129 and the American Bar Association130 in recognizing the rights of persons subject to guardianship.
Scholars and researchers suggest varying, but overlapping, criteria for assessing sexual consent capacity. These criteria for sexual consent include the “knowing, intelligent, and voluntary agreement to engage in a given activity”131 and “having access to sexuality education, including information regarding potential risks, having the ability to engage responsibly in sexual behavior, and recognizing that there is a choice when asked to engage in sexual behavior.”132
Other criteria include a “cognition-plus” analysis, which requires an understanding of choice absent coercion to engage in the specific sexual act and, only if volition is established, an examination of the individual’s ability to understand the consequences of engaging in the particular sexual choice.133 If an ability to understand the consequences of engaging in the particular sexual choice is not found, the cognition-plus criteria allows for an inquiry into whether an “adequate . . . support system” is available to facilitate the sexual choice, which could then satisfy the criteria for sexual-consent capacity.134
YAI, a network of non-profit agencies in New York City that advocates for the sexual rights of individuals with intellectual disabilities, administers supportive services and programs, including residential placements, to individuals with intellectual disabilities. YAI implemented a sexual consent policy over twenty years ago,135 included with this Article online as Appendix 1, that it administers throughout its group homes and other residential settings.136 The YAI sexual consent policy provides two criteria for assessing sexual consent capacity. The first category applies to individuals with the “ability to verbally give informed consent.”137 The second category is tailored to individuals with more severe developmental disabilities who can give “informed consent by communicating through responsible interpersonal behaviors.”138
The assessments include a range of inquiries such as understanding the nature and consequences of the sexual act, including the choice to abstain; understanding the “need for restriction of sexual behavior as to time, place, or behavior”; and an understanding of voluntariness, avoidance of harm and the ability to stop unwanted sexual behavior.139 This Article does not take a position on which particular criterion or set of criteria should be used to determine sexual consent capacity,140 but argues for the necessity of an individualized, fact-specific inquiry141 based on the circumstances of the desired sexuality choice of the individual as a baseline in any capacity determination.
III. The Interplay of Group Homes and States in Effectuating the Olmstead Integration Mandate
Twenty-eight years after the passage of the Americans with Disabilities Act, persons with intellectual disabilities remain in the shadows of full community integration. This Section provides an overview of the Home and Community Based Services waiver program and examines how the interplay between this joint federal-state program and the role of group homes creates a form of intimate discrimination that perpetuates sexual isolation and fosters the sexual exploitation and abuse of persons with intellectual disabilities.158
A. The Home and Community-Based Services Waiver Program
Over the last several decades, institutionalized settings have closed their doors, as smaller, community-based settings are made available to provide community-based services to individuals with intellectual disabilities.159 With the shift from public institutions to private community-based settings, states have taken a hands-off approach in the day-to-day administration of community-based services to individuals with intellectual disabilities. The number of state-run institutions waned to approximately 27,610, as reported in 2012—a decline of 85.5% since the height of institutionalization in 1967.160 Approximately 92% (443,052) of persons with intellectual disabilities who do not reside with family live in a non-state residential setting versus 8% (35,602) who live in state-operated settings.161
In a 1981 amendment, Congress added Section 1915(c) to the Social Security Act, allowing the Secretary of the Department of Health and Human Services (HHS) to waive certain Medicaid statutory requirements for states receiving federal funding to develop tailored, community-based programs and services for persons with intellectual disabilities, and other specified populations.162 Often referred to as the 1915(c) Medicaid waiver (Medicaid waiver) or the Home and Community-Based Services (HCBS) waiver, the purpose of the waiver program is for states to provide community-based supports and services so that target populations are not unnecessarily institutionalized and segregated.163 Through a complex scheme of federal statutory and regulatory guidelines,164 the HCBS waiver program provides federal funding for states to offer services to qualified Medicaid beneficiaries who need a level of institutionalized care that can be provided through community-based supports.165
The HCBS waiver program is the principle means for low-income people with intellectual disabilities to secure support services in the community.166 Prior to the implementation of the waiver program, Medicaid was a primary source of funding for institutions that served people with intellectual disabilities.167 With the expansion of the HCBS waiver program and the steady closure of large institutions, Medicaid funding that once went to institutionalized care has largely been redirected to community-based supports and services.168
Today states receive approximately $19.5 billion dollars of federal funding for HCBS waiver program spending to serve an estimated 741,285 individuals with intellectual and developmental disabilities in support of community integration.169 State and local governments contribute to the funding received by the federal government to sustain its supports and services for the intellectually disabled population.170 Community-based services are delivered primarily through private non-profit agencies to individuals who reside in community-based settings,171 such as a group homes, a family home or the individuals’ private home.
The HCBS waiver program covers services that ordinary Medicaid does not cover such as community-based day programs, counseling and residential habilitation,172 “case management (i.e. supports and service coordination), homemaker, home health aide, personal care, adult day health services, habilitation (both day and residential), and respite care.”173
The Centers for Medicare & Medicaid Services (CMS), an agency within the Department of Health and Human Services, is the federal agency that approves state requests for HCBS waiver program funding.174 There is no limit as to the number of waivers a state may develop and operate if the waiver meets the required qualifications under CMS,175 and multiple services may be offered under each approved waiver.176 Participating states must comply with a complex set of requirements outlined in § 1915(c) of the Social Security Act to qualify for waiver funding. Under 1915(c) states must:
Demonstrate that providing waiver services won’t cost more than providing these services in an institution [, (2)] Ensure the protection of people’s health and welfare [, (3)] Provide adequate and reasonable provider standards to meet the needs of the target population [, and (4)] Ensure that services follow an individualized and person-centered plan of care.177
States must first apply to CMS for approval of the waiver.178 States direct the precise scope and coverage of the HCBS waiver, determining “what services may be provided, how the services are to be provided, and what types of providers may provide the services.”179 States must allocate funding for each specific waiver and identify “how many participants will receive those services, how many units of services the average participant will receive, and reimbursement rates.”180 CMS may approve waivers for additional periods of time upon a renewal application submitted by the State.181 States have the option to amend the services provided under its waivers.182 CMS has ninety days to approve or deny an application for a new waiver, or a renewal or amendment to a waiver.183
B. Group Home Settings
Group homes are licensed by states to administer varying levels of community-based services and supports to intellectually disabled individuals who reside in the community, and are primarily operated by private agencies.184 Private facilities “operate 99.8% of [residential] settings with 1 to 3 people, 97% of the settings with 4 to 6 people, 89% of the settings with 7 to 15 people, and 86% of the settings with 16 or more people.”185 In 2014, in response to growing concerns that group homes and other community-based residential settings began to resemble a form of institutionalized care in violation of Title II and Olmstead, CMS enacted a sweeping set of regulations regarding the administration of the HCBS waiver program.186 More commonly referred to as the “HCBS Settings Rule,” the regulation requires states to submit evidence to CMS that waiver services are being delivered in community-based residential settings that comply with the requirement of the HCBS Settings Rule. If states fail to comply, the federal government may withhold Medicaid reimbursements for services administered through the waiver program.187
Specifically, states must submit evidence to CMS that the residential settings administering services through the HCBS waiver program are:
integrated in, and support full access of individuals receiving Medicaid HCBS to the greater community, including opportunities to seek employment and work in competitive integrated settings, engage in community life, control personal resources, and receive services in the community to the same degree of access as individuals not receiving Medicaid HCBS.188
In matters of autonomy and choice, the HCBS Settings Rule creates an individualized approach to residential care,189 shifting the power dynamic190 so that residents are ensured a “right of privacy, dignity and respect, and freedom from coercion and restraint.”191 The rule also requires that residential settings provide an environment that “[o]ptimizes, but does not regiment, individual initiative, autonomy, and independence in making life choices, including but not limited to, daily activities, physical environment, and with whom to interact.”192 CMS provided a time period for states to comply with the HCBS Setting Rule, with a current deadline of March 2022.193
The HCBS Settings Rule reflects the understanding that community integration that is devoid of privacy, autonomy and choice is, in effect, a diluted form of institutionalized care. With greater scrutiny now placed on residential settings that purport to comply with community integration under Title II and Section 504, the new HCBS Settings Rule may push group homes to revise their approach to issues of sexuality and provide a greater tool for residents in advocating for their sexual rights.
C. Perpetuating Sexual Exploitation in the Name of Protection
The success of community integration rests largely on the interplay of the state agencies that administer community-based services and the structural systems that are tasked with identifying and administering services to intellectually disabled individuals. Although the general goal of the state agencies and group home operators is successful community integration in all areas of the individual’s life, these systems often perpetuate the desexualization of intellectually disabled adults—where “isolation and exclusion from the intimate realm altogether”194 is the norm. This interplay creates a form of “intimate discrimination at a structural level,”195 one that reinforces the barriers that prevent persons with intellectual disabilities from developing healthy sexual and intimate relationships.
State agencies shoulder equal power with group homes in how community-based services are administered; “the culture, expectations, resources, and available accommodation options established within individual state, developmental disabilities service systems have significant effect on the extent to which people are actually afforded significant say in the decisions that affect their lives.”196 With state agencies paying little attention to their day-to-day operations, group homes that are responsible for supporting the independence and self-determination of intellectually disabled individuals have established their role in limiting the sexual rights of their residents.197 These power structures have buried the voice of adults with intellectual disabilities residing in community-based settings; they cannot participate in choices of sex and intimacy because sexuality is shamed and punished, and proactive sexuality services198 are not provided.
Although group home operators aim to shield persons with intellectual disabilities from sexual exploitation and abuse, scholars have long believed that overprotective and punitive policies toward expressions of sexuality and the lack of access to sexuality services places individuals with intellectual disabilities at a great risk of sexual abuse and exploitation.199 Individuals with intellectual disabilities experience sexual exploitation and abuse at a significantly higher rate than persons without disabilities.200
“The professionalization of intellectual disability,” as described by Michael Carl Gill in Already Doing It: Intellectual Disability and Sexual Agency, “works to deny individuals the ability to consent to sexual activity.”201 Gill describes “sexual abuse as an issue of power and exploitation rather than an issue of consent,”202 suggesting that a closer examination must be given to residential settings where community-based services “are delivered and designed [to] feed into a higher rate of sexual abuse and assault.”203
While the ADA recognizes “overprotective rules and policies” as a form of discrimination,204 some group homes enforce policies (formal and informal) that withhold sexuality services205 based on historically instilled notions that persons with intellectual disabilities are “perpetual children,”206 predatory, or too disabled to engage safely in intimate acts.207 Yet, instances of sexual abuse are often attributable to the very individuals who are tasked with protecting residents.208 Residents, for example, often rely on group home staff to provide transportation and other mechanisms that facilitate socialization, creating an environment of dependency among group home residents.209 This dependency can create a structural power dynamic wherein compliance with the rules of the group home is expected, leading those with power to unduly wield it over residents—sometimes in the form of sexual exploitation or abuse.210
Compounding this issue of structural power are the overprotective policies that limit or restrict sexuality, which are driven by a presumption of incapacity based on ableist and paternalistic notions that individuals with intellectual disabilities are innately incapable of engaging in sex and intimacy and, thus, must be protected from themselves and others.211 As this Article argues above,212 this presumption of incapacity must be challenged in order to move forward in recognizing sexuality as an integral aspect of full community integration.
Few group homes have taken purposeful measures to balance the risk of abuse that may arise in the course of a resident’s intimate relationship with the duty to provide community-based services to support leading full, meaningful lives; as a result, sexuality is effectively erased from the disabled individual’s life. In the nearly two decades since Olmstead, the notion of full community integration has come to exclude community-based supports and services aimed at fully integrating intellectually disabled adults into society in matters related to sexuality.
While both men and women are impacted by sexual violence, sexual abuse and exploitation disproportionately impacts women with intellectual disabilities.213 A study of adult women with intellectual disabilities found that protective and punitive policies have proven counterproductive, even harmful, to the health and safety of intellectually disabled women.214 Women may not have the tools to recognize inappropriate sexual conduct or how to establish boundaries when confronted with potentially harmful sexual behavior.215 Or, even if the abuse is recognized, reporting may be discouraged.216
With sexuality treated as a taboo by group home operators, residents resort to other ways of engaging in intimate conduct.217 In one study, a resident acknowledged that the restrictions on her sexual choices led her to find ways to sexually engage with her boyfriend, beyond the watchful eye of group home staff.218 Issues concerning sexually transmitted diseases, awareness of power dynamics in intimate relationships and other issues related to sexual health and safety are discussed only when issues of sexual abuse arise and, even then, the victim of the incident is often subject to punishment and shame.219 Conversely, conversations related to positive sexuality are “actively ignored and discouraged.”220
D. Reinforcing the Presumption of Incapacity
The unreported case Forziano v. Independent Group Home Living Program, Inc.221 provides insight into counterarguments that group homes and government entities present to justify the limitation of choices related to intimacy between adults with intellectual disabilities. While Forziano did not involve an integration regulation claim, it is illustrative of the ability of group homes to limit the sexual and intimate decisions of residents. The backstory of Forziano involves Paul and Hava, two adults with intellectual disabilities, who fell in love after meeting in their day habilitation program.222 After dating for several years, they wanted to live together in the same group home. The group homes argued that New York State regulations provided them with broad discretion to limit the personal choices of residents based on individualized assessments of a resident’s functional capacity.223
As a result, the group homes required Paul and Hava to undergo a sexual consent evaluation following their request to live together; the facilities reasoned that such an evaluation fell under the umbrella of permissible assessments used to determine a resident’s functional capacity, and argued that the assessment established legitimate grounds for limiting a resident’s choices.224 The Clinical Director of Paul’s group home conducted his sexual consent evaluation, finding that he did not have the capacity to consent to sexual activity.225 The validity of Hava’s prior sexual consent evaluations was disputed.226
The couple reached out to the State agency that administers community-based services in an effort to obtain sexual education services and to get another sexual consent evaluation, but the agency provided no assistance.227 In their claim against the group homes, the couple argued that the denial of their right to live together in a state-regulated group home setting violated the ADA, Section 504 of the Rehabilitation Act, the Fair Housing Act, the Medicaid Act, and other state and federal laws.228
The Court disagreed, dismissing their case for failure to state a claim. During oral argument before the Second Circuit, Hava’s group home, Maryhaven, stressed the importance of sexual consent evaluations and the necessity of relying on the professional judgment of such evaluations.229 Maryhaven relied on the sexual consent assessment determination, which concluded that sexual conduct between Hava and Paul would be “permitting abuse”230 because a cognitive evaluation concluded that Hava had the mental age of a four-year-old girl.231 The State agency also deferred to the group homes’ reliance on the sexual consent assessment determination in finding that Paul and Hava did not have capacity to cohabitate.232
The group homes manipulated the outcome of Paul and Hava’s request to live together by arguing that the idea of two intellectually disabled adults living together in a group home was “‘unprecedented,’ ‘impossible,’ and ‘fraught with difficulties.’”233 A later independent sexual consent evaluation, which included “specialized educational materials” to assist Paul and Hava in taking the evaluation, however, determined that “[b]oth Paul and Hava were . . . able to give verbal informed sexual consent.”234 The group homes rejected the results of the independent evaluation, relying on its own internal expert opinion to support the position that Paul and Hava did not have the capacity to engage in sexual activity.235
These arguments capitalize on the inaccurate notion that supporting the right of adults with intellectual disabilities to express their sexuality naturally results in “harmful abusive and exploitative sexual behavior.”236 Moreover, they further propel the misguided notion that purported mental age is a determinative factor in assessing the right of intellectually disabled adults to engage in acts of intimacy. Lastly, Forziano exemplifies how a resident’s challenge to a group-home decision or policy can easily devolve into a battle of the experts. As a result, the right to make decisions about personal choices around sex, intimacy, and whether to live together is placed in the hands of so-called experts whose sterile, clinical approach belies the emotional and highly personal nature of the issue.
In Olmstead, the Court extended great deference to a state facility’s medical professional in making an eligibility determination as to whether a disabled individual may safely receive continued habilitation services in a community-based setting.237 The reliance on professional judgment to ascertain the capacity of an adult with intellectually disabilities to engage in sex and intimacy is problematic for several reasons. First, the medical judgment may be tainted by the desire of the group home operator to limit the resident’s sexual rights. In Forziano, as in Julia R.’s case, the group home relied on the sexual consent assessment conducted by a professional affiliated with the group home operator, raising doubts as to the independence of this determination.238 In reference to the application of the professional-judgment standard in areas that include challenges to the care and medical treatment of persons in state institutionalized care, one scholar noted that “professional judgment . . . is distorted beyond recognition by the limited resources, coercive environment, and unavoidable conflicts of interest inherent in the public sector.”239
This distortion in professional judgment is equally applicable in private, group home settings, where sexual rights are often denied or controlled based on several systemic and environmental factors, including “personal beliefs and attitudes of . . . caretakers regarding the sexuality of their clients,”240 restrictive rules and policies concerning relationships, and the oftentimes “threatening” stance caregivers take when issues of sexuality arise.241 Fear of group home operator liability may also taint the value of the professional judgment determination. Another scholar noted, “[s]exual consent causes the disability sector great concern and this concern revolves around service provider liability and not about the person’s right to sexual expression.”242
Second, as evidenced in Julia R.’s case, reliance on sexual consent capacity assessments (or the like) can result in indefinite limitations on residents’ sexual rights. These assessments often engender blanket prohibitions on sexual behavior, thus negating the responsibility of group homes to provide education and training supports to residents who express interest in sex and intimacy. Third, the reliance on a “mental age” that is identified in a cognitive evaluation is “a misleading concept,”243 providing group home operators with a false sense of rightness when denying intellectually disabled adults supportive sexuality services. The reliance on “mental age” further relegates persons with intellectual disabilities to the status of perpetual children,244 incapable of engaging in acts of intimacy. The reliance on “mental age” is similar to the improper reliance on IQ to determine an intellectually disabled person’s functional and adaptive deficits and abilities.
In Hall v. Florida, the Supreme Court rejected a Florida law that conditioned a criminal defendant’s ability to present evidence as to intellectual disability on a showing that the defendant had an IQ of seventy or lower; and, if the defendant could establish his status as an intellectually disabled person, he would be ineligible for the death penalty.245 Defendants with an IQ of seventy or above, by contrast, could not put forth any evidence as to intellectual disability, such as “deficits in adaptive functioning,”246 making them eligible for capital punishment.247 In rejecting the Florida law, the Court reasoned that “[i]ntellectual disability is a condition, not a number,”248 finding that “[a] State that ignores the inherent imprecision of these tests risks executing a person who suffers from intellectual disability”249 in violation of the Eight Amendment of the Constitution.
It stands to reason, then, that the identification of a “mental age” or a specific “IQ” without a more taxing inquiry into a resident’s adaptive functioning, should not act as grounds to deny the sexual rights of intellectually disabled adults. As to the happy ending for Paul and Hava: Despite their court loss, they married (after seven years of dating) and, with the help of their families, found a group home that allowed them to live together.250 The barriers confronted by Paul and Hava almost prohibited the couple from exercising decisions around some of the most intimate and personal aspects of their life. Many group home residents are not as fortunate.
IV. Group Homes Are Engaged in a Form of Disability-Based Discrimination by Sexually Isolating Individuals with Intellectual Disabilities in Violation of Section 504
This Section discusses Olmstead and the integration mandate of the ADA and lays out how courts rely on the robust statutory and regulatory framework of the ADA in analyzing integration challenges brought under Section 504 as well as under Title II. Recent Title II cases demonstrate the evolution of Olmstead and provide guidance for how a prima facie case of disability discrimination under Section 504 may be made against a group home for sexual isolation. In conceptualizing sexual isolation as disability-based discrimination under Section 504, it is first necessary to establish that the integration mandate analysis of Title II of the ADA and its application in Olmstead applies equally to a claim against group homes under Section 504.
The first step in making a prima facie case of disability-based discrimination under Section 504 is to establish that an individual with an intellectual disability is a “qualified individual with a disability.”251 Second, a group home must qualify as a “program or activity receiving Federal financial assistance.”252 Third, the plaintiff must establish that she was “excluded from the participation in, [was] denied the benefit of, or [was] subjected to discrimination” by the group home “solely by reason of her or his disability.”253 Additionally, in proving a prima facie discrimination case, plaintiffs must prove that the community-based service sought already exists and is not new. After establishing a prima facie case of discrimination under Section 504, it is also necessary to identify whether group homes are under an affirmative duty to address the discriminatory conduct and, if so, whether the remedy sought would constitute an undue hardship, thereby relieving a group home of its duty to comply with Section 504.254
A. The Applicability of Title II and the Olmstead Analysis to an Integration Challenge Under Section 504
For guidance in interpreting the ADA integration regulation, the Olmstead Court looked to the statute’s Congressional findings and purpose. The Court highlighted Congress’ intent to provide “equality of opportunity, full participation, independent living, and economic self-sufficiency for”255 persons with disabilities and acknowledged the legislature’s broad goals of ensuring that the ADA “provide[d] a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities.”256 Congress identified as a form of discrimination society’s history of isolating and segregating individuals with disabilities.257
Following the congressional intent of the ADA, the majority in Olmstead recognized that segregating persons with intellectual disabilities in institutions “perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life.”258 The Court emphasized the impact that such segregation has on the emotional health and personal development of persons with disabilities, finding that “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.”259
In Olmstead, the Court further determined that people with intellectual disabilities were forced to “relinquish participation in community life” to receive needed medical services when those services could be enjoyed without such persons relinquishing participation if they were given reasonable accommodations.260 The Court reasoned that persons without mental disabilities were not forced to make this “similar sacrifice” of enduring community isolation to receive necessary medical services.261
Title II of the ADA and Section 504 contain nearly identical statutory language. Title II provides that “no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity.”262 Similarly, Section 504 provides that “[n]o otherwise qualified individual with a disability . . . shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance.”263
The non-discrimination language of Section 504 differs from Title II in two respects. First, under Section 504, the allegedly discriminatory program or activity must be a recipient of federal financial assistance;264 “program or activity” is defined to include “an entire corporation, partnership, or other private organization . . . which is principally engaged in the business of providing education, health care, housing,” or “social services.”265 Administrators of community-based services rely largely on HCBS waiver funding reimbursements to administer their programs and services to intellectually disabled individuals who reside in the community.266 Courts have found that Medicaid reimbursements qualify as “federal financial assistance” for purposes of Section 504 for entities that include hospitals, nursing homes and group homes.267 In addressing this issue, the Fifth Circuit Court of Appeals in United States v. Baylor University Medical Center determined that Section 504 was “explicitly patterned” after Title VI of the Civil Rights Act of 1964 and Title IX of the Education Amendments Act with the purpose of rooting out “invidious discrimination in federally funded programs.”268 Medicaid reimbursements are considered federal financial assistance for purposes of Title VI and Title IX.269
Second, Section 504 provides that the discrimination must be “solely by reason of . . . disability.”270 Courts have found that “the Rehabilitation Act’s ‘solely by reason of . . . disability’ requirement need not be separately analyzed in cases alleging a violation of the integration mandate because the alleged discrimination—undue isolation—stems from a failure to satisfy an affirmative duty, regardless of discriminatory intent.”271 In other words, discriminatory intent is not a required element to prove disability-based discrimination in claims alleging a violation of the integration regulations under Title II and Section 504.
Title II and Section 504 each create an affirmative duty to make reasonable modifications or accommodations to avoid disability-based discrimination, but this duty is not absolute.272 As stated earlier, under Title II, a public entity has an affirmative duty to modify its “policies, practices, or procedures” unless such “modification would fundamentally alter the nature of [its] service, program, or activity.”273 This is generally referred to as the “fundamental-alteration” defense. The reasonable modification regulation of Title II tracks the language of Section 504, which similarly provides that a recipient of federal financial assistance must make reasonable accommodations unless the accommodation would cause an “undue hardship on the operation of its program.”274 Courts apply the reasonable modification/accommodation and undue hardship provisions identically in integration mandate challenges brought under Title II and Section 504.275
As Olmstead jurisprudence developed, the “federal courts analyzing integration mandate challenges under the ADA and the Rehabilitation Act consistently interpret the provisions together, notwithstanding the ‘solely by reason of . . . disability’ language in the Rehabilitation Act.”276 In moving forward, this Section will similarly apply Title II and Olmstead to challenge the conduct of group homes under Section 504. Under this analysis, a group home resident could assert a challenge under Section 504 to argue that group homes have an affirmative duty to avert the unjustified sexual isolation of their residents; this duty requires a modification of both the discriminatory policies that limit expressions of sexuality and the substandard administration of sexuality services.
B. A Person with an Intellectual Disability Is a “Qualified Individual” with a Disability Under Section 504
Assuming then, that group homes are covered programs under Section 504 as recipients of federal funding, the next step in establishing a prima facie case of disability-based discrimination is to establish that an individual with an intellectual disability is a “qualified individual with a disability.”277 Title II of the ADA and Section 504 define disability similarly. An individual with a disability is one who has “a physical or mental impairment that substantially limits one or more major life activities.”278 Individuals with intellectual disabilities can likely establish that their individual impairment creates a substantial limitation in one or more “major life activities.”279 In analyzing whether an intellectually disabled person meets the definition of disabled under these statutes, it is necessary to understand the cognitive and functional limitations that are often associated with intellectual disability.
A diagnosis of intellectual disability is based on a finding of “significant limitations in intellectual functioning and adaptive behavior as expressed in conceptual, social, and practical skills, and age of onset before age 18.”280 Intellectual functioning includes “reasoning, planning, solving problems, thinking abstractly, comprehending complex ideas, learning quickly, and learning from experience.”281 Adaptive functioning is a collection of learned behaviors and skills that enable individuals to interact with the world and may impact an individual’s conceptual (e.g., “language; reading and writing; and money, time, and number concepts”), social (e.g., “interpersonal skills . . . and social problem solving”) and practical functioning (e.g., ability to manage money, maintain a safe environment, and perform other activities of daily living).282
As a result of the limitations that stem from intellectual disability, a group home resident with an intellectual disability requires some supportive services to more independently perform one or more major life activities in areas that may include “learning,”283 “communicating,”284 and “interacting with others.”285 Therefore, an individual with an intellectual disability who resides in a group home would qualify as “disabled” under Section 504.286
Next, it must be established that the individual meets the standard for being a “qualified” individual with a disability under Section 504. Section 504 provides that a “qualified” individual with a disability is one “who meets the essential eligibility requirements for the receipt of [the federally-funded] services.”287 To establish coverage under Section 504 as a “qualified individual with a disability,” the group home resident must establish that they meet all of the eligibility requirements to receive the programs, services and activities of the group home; or can receive such services with reasonable accommodations.288
For residents who reside in group homes, the facility has already made a determination that the individual displays the ability to live in a community-based setting and to receive tailored supports and services administered by the group home.289 These services provide community-based treatment supports to strengthen the resident’s independent living skills. A determination as to what specific, individualized sexuality service is appropriate to meet the needs of a resident’s desired goals for sex and intimacy would be determined through the regular course of an individualized service plan assessment.290 Therefore, an intellectually disabled group home resident is a qualified person with a disability under Section 504. To the extent that there are individual issues of capacity related to the sexual expression goals of a resident, the question would shift to whether the group home can accommodate the resident by providing supports and services that address these capacity issues.
C. The Integration Regulations of Title II and Section 504 Are Properly Applied to the Context of Sexual Isolation
Once it is established that the intellectually disabled person is a “qualified individual with a disability” and a group home falls within the coverage of Section 504, it must be shown that the integration regulation of Section 504 is properly applied in the context of sexual isolation as a form of disability-based discrimination. The Olmstead majority focused on the unjustified institutional segregation and isolation of plaintiffs. As time passed, cases challenged this limited application of Olmstead to successfully argue that the integration mandate of the ADA applied to the “risk of institutionalization,” testing the parameters of the Olmstead integration mandate beyond the context of institutionalized care.291
A recent line of cases is pushing the Olmstead jurisprudence even further, opening the door to applications beyond the four walls of an individual’s institutional or community-based placement and asking whether the community-based services provided are sufficient to avert unjustified segregation and isolation.292 By way of example, in Lane v. Kitzhaber, the court determined that “segregation in the employment setting” qualified as a cognizable integration claim under Olmstead and Section 504.293 In Lane, plaintiffs alleged that they were forced to work in segregated, sheltered workshops294 alongside only other disabled persons (and for less than minimum wage).295 The court determined that defendants violated Title II of the ADA and Section 504 “by denying employment services to plaintiffs for which they are eligible with the result of unnecessarily segregating them in sheltered workshops.”296
Focusing on the severe deprivation that an individual experiences as a result of unjustified isolation and segregation (as articulated in Olmstead), the court concluded that this harm is equally felt by those who are relegated to segregated employment.297 In expanding the application of Olmstead to sheltered workshops, the court acknowledged that no prior cases had applied the integration mandate where the state’s conduct did not place the individual at risk of institutionalization.298 However, the court determined that “the broad language and remedial purposes of the ADA, the corresponding lack of any limiting language in either the ADA or the integration mandate itself, and the lack of any case law restricting the reach of the integration mandate” supported its applicability to situations of forced isolation of intellectually disabled individuals in sheltered workshops.299
In determining what qualifies as “the most integrated setting,” courts have relied on the ADA’s regulatory guidance, which describe it as “a setting that enables individuals with disabilities to interact with nondisabled persons to the fullest extent possible.”300 As persons with intellectual disabilities are moving in greater numbers to community-based settings, courts are recognizing that this limited definition of integrated setting is not enough to determine compliance with Title II and Olmstead. In Lane, for example, the court looked to the DOJ Statement for further guidance towards determining what qualifies as an “integrated setting” under Title II.301 As outlined in the DOJ Statement, the most integrated settings are:
those that provide individuals with disabilities opportunities to live, work, and receive services in the greater community, like individuals without disabilities. Integrated settings . . . offer access to community activities and opportunities at times, frequencies and with persons of an individual’s choosing; afford individuals choice in their daily life activities; and, provide individuals with disabilities the opportunity to interact with non-disabled persons to the fullest extent possible. . . . By contrast, segregated settings . . . include . . . congregate settings characterized by regimentation in daily activities, lack of privacy or autonomy, policies limiting visitors, or limits on individuals’ ability to engage freely in community activities and to manage their own activities of daily living . . . .302
The DOJ confirmed that compliance with the principles of Olmstead requires more than mere assurance that disabled persons have the opportunity to interact with persons without disabilities. Integrated settings must include those aspects of life that all persons enjoy, including privacy, autonomy, the ability to exercise choice and opportunities to engage in activities alongside others in the community.303 The use of this more expansive definition of integrated setting allowed the court in Lane to apply Olmstead in an unprecedented way, recognizing that isolation and segregation are not necessarily alleviated by relocation to a community-based setting, if an individual is denied the right to engage in life’s full palette of experiences and opportunities.304
In a similar case, United States v. Rhode Island,305 the DOJ entered into the first statewide consent decree after finding that Rhode Island placed intellectually disabled individuals in segregated sheltered workshops and facility-based day program settings, risking unnecessary segregation in violation of Title II of the ADA.306 The consent decree required Rhode Island to implement mechanisms to ensure that the employment supports and services provided to approximately 3,000 individuals “are adequate and sufficient to achieve integration, increased independence, and increased economic self-sufficiency.”307
Recent cases like Lane and DOJ v. Rhode Island are reframing the definition of isolation and segregation in integration mandate challenges, extending its meaning to recognize its differing forms. Two additional cases, Steimel v. Wernert308 and Guggenberger v. Minnesota,309 further illustrate this point. In Steimel, plaintiffs argued that they were unjustifiably segregated in their homes as a result of the state’s redistribution of Medicaid waiver services programs, which dramatically reduced the number of hours available to participate in community-based activities from forty to twelve hours per week.310 A critical aspect of Steimel is the Seventh Circuit’s analysis of what qualifies as the “most integrated setting” under Title II and Section 504.311 The court looked beyond the restrictive definition of integrated setting and, much like the court in Lane, referred to the DOJ Statement for guidance.312
The court rejected as a “crabbed binary”313 the state’s argument that a setting is limited “to two kinds of physical structures: an institution or a location in the community,”314 noting that the word setting “[o]rdinarily . . . denotes an environment or situation rather than any particular physical structure.”315 The court also reasoned that the ADA regulation’s “most integrated” language “impl[ies] more than two possibilities.”316 In regards to plaintiff’s confinement, the court found that isolation within the home “may often be worse than confinement to an institution on every other measure of ‘life activities’ that Olmstead recognized.”317
In Guggenberger v. Minnesota, the court similarly interpreted the ADA to “have an expansive reach, touching upon all aspects of an individual’s life in which ‘isolat[ion] and segregat[ion]’ may be experienced,” finding that “segregation” and “institutionalization” are “separate and distinct” concepts under Title II.318 Here, the plaintiffs alleged violations of the integration mandates of Title II and Section 504 as a result of languishing on the statewide waiting list to receive Medicaid waiver services that would enable access to community-based services.319
In finding that plaintiffs properly asserted an integration mandate claim, the court in Guggenberger held that the integration mandate applies across “a wide range of settings”320 and, although they resided in their own homes, plaintiffs were “not living, working, and receiving services in” the most integrated setting because they could not “interact with nondisabled persons to the fullest extent possible,” and thus participate in community life.321 This inability to participate in community life goes to the core of what unjustified isolation and segregation means in the evolved definition of setting.
Sexual isolation experienced by group homes residents can be analogized to the isolation experienced by plaintiffs in Lane, Steimel and Guggenberger. In Guggenberger, for example, the Court highlighted plaintiffs’ isolation, noting their “feelings of segregation from community,” their “feelings of sadness and isolation,” and their desire “to make more . . . choices” and have “more independence and integration into the community on a social and cultural level,” which they could not do without increased Medicaid waiver service hours.322
To appreciate the extent of the emotional and psychological harm that results from isolation and segregation, one must understand that harm can arise in multiple contexts while living in community-based settings: through forced employment in sheltered workshops, in confinement to one’s home, or via severe limitation of access to others in the community as a result of reduced services. This understanding should be applied equally when examining whether a set of overprotective and punitive sexuality policies and/or a lack of access to sexuality services qualify as forms of unjustified isolation under Section 504.
The recently enacted HCBS Setting Rule lends further support for reframing the meaning of “settings” as something beyond the physical.323 In implementing the rule, CMS clarified the following in reference to defining community-based settings:
CMS is moving away from defining home and community-based settings by “what they are not,” and toward defining them by the nature and quality of individuals’ experiences. The home and community-based setting provisions . . . establish a more outcome-oriented definition of home and community-based settings, rather than one based solely on a setting’s location, geography, or physical characteristics. The changes related to clarification of home and community-based settings will maximize the opportunities for participants in HCBS programs to have access to the benefits of community living and to receive services in the most integrated setting . . . .324
Further, in the HCBS Settings Rule implementing regulations, CMS clarifies that an integrated setting includes an environment that “supports full access of individuals receiving Medicaid HCBS to the greater community, including opportunities to seek employment . . . , engage in community life, . . . and receive services in the community to the same degree of access as individuals not receiving Medicaid HCBS.”325 The detrimental and enduring impact that results from the stigmatization of intellectually disabled persons as sexual beings can be recognized in areas that include sexual health,326 psychological and emotional well-being,327 and opportunities for socialization.328
D. Removing the “Existing Services” and “New Services” Analysis as a Requirement to Establish a Prima Facie Case of Discrimination
There is yet another hurdle in establishing a prima facie discrimination claim in the context of sexual isolation: whether the remedy sought is a request for new or existing services. This Part argues that the new-and-existing-services question is no longer applicable in integration challenges under Title II and Section 504 that seek community-based waiver services as a remedy to unjustified segregation and isolation. In Olmstead, the Court expressed the view, in a footnote, that states must adhere to the non-discrimination mandate under Title II “with regard to the services they in fact provide,” but clarified that compliance did not “impose a ‘standard of care’” or “require States to ‘provide a certain level of benefits’ to individuals with disabilities.”329
Following Olmstead, courts have interpreted this limitation to mean that states are under no obligation to provide the requested services if it results in the creation of “new services.” The Second Circuit case, Rodriguez v. City of New York330 set the trajectory for how courts now interpret integration mandate claims that confront questions of whether requests for community-based services are appropriate under Title II and Section 504.
In Rodriguez—a case decided only four months after Olmstead—the court rejected plaintiffs claim that New York State must provide safety monitoring as a Medicaid service for individuals with cognitive impairments such as Alzheimer’s, who are at risk of institutionalization without the monitoring.331 In rejecting plaintiffs’ integration claim, the court held that Olmstead required adherence to the non-discrimination provision only as to services that the State already provides.332 In its narrow application of Olmstead, the court further reasoned that Olmstead applied only “where Georgia should provide treatment, not whether it must provide it,” noting “[u]nder the ADA, it is not [the court’s] role to determine what Medicaid benefits New York must provide.”333
In an attempt to distinguish Rodriguez, courts developed an additional element that plaintiffs must overcome to make a prima facie case of discrimination under Olmstead. This element requires plaintiffs to establish that they are not seeking “new” or “existing” services to address the discriminatory conduct in question; specifically, the plaintiff must seek services that the State currently provides to those in institutionalized care, or services that are the same, or substantially similar, to those received by disabled persons in institutionalized care.
In Townsend v. Quasim, the court determined that plaintiff’s requested services were not “new” because plaintiff “simply requests that the services he is already eligible to receive under an existing state program (assistance in dressing, bathing, preparing meals . . . ) be provided in the community-based adult home where he lives, rather than the nursing home setting the state requires.”334 The court reasoned that the services were not new because plaintiff would receive the same services through the Medicaid program—whether in an institutionalized or community-based setting. The court further emphasized that the location of the services was central to this determination, reasoning that, “[a]s Rodriguez makes clear, where the issue is the location of services, not whether services will be provided, Olmstead controls.”335
The Tenth Circuit followed Townsend in holding that a State’s refusal to provide unlimited medically necessary prescription medications to individuals residing in the community, while extending this same service to those residing in a nursing home, violated Title II of the ADA.336 Similar to Townsend, the court in Fisher determined that “Plaintiffs are simply requesting that a service for which they would be eligible under an existing state program, unlimited medically necessary prescriptions, be provided in a community-based setting rather than a nursing home.”337 Like Townsend, the court reasoned that because plaintiff would receive the same services through the Medicaid program in either an institutionalized or a community-based setting, the services were not new.
In Radaszewski,338 the Fourth Circuit adopted Townsend and Fisher, reasoning that the services sought by plaintiff were not new “so long as it is possible for the plaintiff to show that the services he seeks to receive at home are, in substance, already provided in the institutional setting.”339 Even in Steimel and Lane, which significantly expanded the definition of settings, the courts applied the new-and-existing-services analysis narrowly.340
The evolution of the meaning of “integrated setting” as articulated in recent Olmstead cases, the enactment of the HCBS Settings Rule, and the individualized, person-centered trajectory of the Medicaid waiver services program make the new-and-existing-services analysis seem anachronistic, out-of-touch with the way the Medicaid waiver program operates today. This outmoded analysis undermines the purpose of the HCBS waiver program.341 The purpose of the HCBS waiver program is easily defeated if courts continue to require, as an element of an integration regulation claim, evidence that the requested services would have been available if the individual resided in institutionalized care, or the requested services are the same, or substantially similar, to those received by disabled persons in institutionalized care.342
The requirement of individualized assessments and updated service plans for HCBS waiver recipients naturally results in the ebb and flow of new services that are offered to HCBS waiver recipients under individual waivers.343 If new services were not offered, the individualized assessment that is required for waiver recipients under federal law would be a meaningless exercise.344 Even if the HCBS waiver program, as a policy matter, does not speak directly to what Olmstead requires under the ADA, without the individualized implementation of the program, individuals with intellectual disabilities would have little hope of achieving the promise of Olmstead in transitioning out of segregated settings and into the community.
The question of whether the requested waiver service imposes an impermissible “standard of care” or requires states to “provide a certain level of benefits” should not be analyzed against whether the service sought is a new or existing service. The analysis must rest on whether the remedy would fundamentally alter the nature of the defendants’ program. Several recent cases provide guidance for analyzing plaintiffs’ requested remedy in this way. In Guggenberger, the court looked to the existing waiver program and did not question the services that plaintiffs sought to access from the waiver program.345 Specifically, the court found that plaintiffs properly identified the types of services that would increase their ability to integrate into the community (in areas that include “assistance with financial management and budgeting; nutrition and menu planning; healthcare management; and assistance in obtaining and maintaining gainful employment”346) and determined that plaintiffs’ desired remedy required a close factual examination to decide whether it would fundamentally alter the nature of the State’s program.347
Similarly, in Murphy v. Minnesota Department of Human Services, plaintiffs survived defendants’ motion to dismiss because the court determined that plaintiffs were not requesting new services, but merely services that existed under the Medicaid waiver program.348 The court determined that plaintiffs successfully “identif[ied] examples of the specific services they seek to transition to more integrated settings, and . . . allege that these services are already available under the Disability Waivers.”349 The court found that that “[t]o the extent Plaintiffs seek the creation of new services or residential settings or the allocation of additional state funding, the Court can evaluate the propriety of such requests as this case proceeds.”350 The court followed Guggenberger, reasoning that “it would be premature to resolve Defendants’ fundamental alteration defense in their favor at the pleading stage.”351
Although the integration challenge in Guggenberger and Murphy involved access to the HCBS waiver program, the courts also considered the types of services sought by plaintiffs to remedy the discriminatory conduct. By focusing on the waiver program versus the appropriateness of the services, the courts honed in on whether the requested services were based on an existing Medicaid waiver program352 or were already available under the waiver program.353 There was no further inquiry into whether the plaintiffs were seeking services that the State already provided to individuals in institutionalized care, or whether the services sought were the same as, or substantially similar to, those received by disabled persons in institutionalized care.
In a recent decision,354 a court in the Western District of Texas rejected outright defendants’ new-and-existing-services argument. Citing to Townsend, Fisher and Radaszewski, defendants argued that plaintiffs did not state a discrimination claim under Title II in light of a failure to “identify any Medicaid service that Texas makes available in institutional settings but does not offer in community-based settings.”355 The court distinguished these cases and determined that defendants’ position was contrary to the integration regulations implemented under Title II and Section 504.356
The analysis of whether the requested services in integration mandate challenges under Title II and Section 504 are appropriate must be considered against the principles of Olmstead, its progeny, and the purpose of the HCBS waiver program and Settings Rule. The HCBS waiver program is designed to move beyond the isolated, segregated, and repressive environment of confined care towards integrating intellectually disabled individuals with others in the community through the administration of individualized and tailored services.
The application of the new-and-existing-services analysis effectively creates a simulated institutionalized environment where community integration amounts to the sacrificing of one’s sexuality, permanently driving the right to intimacy and sex into the shadows. The historical suppression of sexuality in institutionalized care allows group homes to simply argue that sexuality services are a new service, thereby alleviating the affirmative duty under Title II and Section 504 to provide these services as a reasonable modification to achieving full community integration. It is time to jettison the existing/new-services analysis and adopt an approach that aligns with the evolution of Olmstead. Moreover, it is time to acknowledge that this outmoded analysis contradicts the reality that adults with intellectual disabilities are living longer lives, gaining greater autonomy, marrying, starting families, and accessing education and employment opportunities—largely due to the access of new supports and services provided through the HCBS waiver program itself.357
V. Where Do We Go from Here?: Overcoming the Fundamental Alteration Defense Through Reasonable Modifications to Support the Sexuality of Group Home Residents with Intellectual Disabilities
This Section challenges the fundamental alteration defense against a claim of sexual isolation under the integration regulations and proposes modifications to address the sexual isolation of group home residents. The discussion proposes the following modifications to group home policies and the administration of their services to avert disability-based discrimination: (1) a treatment planning process that properly and fairly assesses the individual’s ability and interest in issues related to sex, intimate relationships, marriage, parenting, family, and healthy sexual behaviors; (2) a provision of sexuality services to those individuals who qualify for and are interested in them; and (3) agency-wide policy changes, which includes implementing policies and procedures that support sexuality rights that comply with the HCBS Settings Rule and other CMS regulations.358
A. The Fundamental Alteration and Undue Hardship Defense
Once it is established that the group home engaged in a form of disability-based discrimination under Section 504 through the unjustified sexual isolation of its residents, the next step is to determine whether the proposed modifications to address the discriminatory conduct are reasonable, or, if such modifications would fundamentally alter the nature of a group home’s programs or activities thereby alleviating the group home of its duty. In Olmstead, the Court clarified the limits to a request for reasonable modifications. The Court determined that the evaluation of a fundamental alteration defense rests on the balancing of several factors, including “the cost of providing community-based care . . . , the range of services the State provides others with mental disabilities, and the State’s obligation to mete out those services equitably.”359 Four Justices joined the majority opinion to further clarify that the modification requirement was “not boundless.”360 The plurality in Olmstead reasoned that states are not required to provide reasonable modifications to some at the expense of providing appropriate care and treatment to others.361
A plurality of Justices also suggested that the reasonable modification standard could be met by demonstrating that a “comprehensive, effectively working plan” was in place to transfer qualified individuals with a disability into community-based settings and where the State implemented “a waiting list that moved at a reasonable pace” to move persons out of institutions.362
1. Proposed Modifications
The first proposed modification under Section 504 seeks a treatment planning process administered by group homes that properly and fairly assesses the individuals’ ability and interest in issues related to sex, intimate relationships, marriage, parenting, family, and healthy sexual and intimate relationships. Group homes assume the role of supporting intellectually disabled residents on their path toward achieving full community integration by supporting access to community-based services designed to address their individualized needs.363 In this role, group home operators can work together with the agency that administers HCBS waiver services to provide continued, tailored supports and services to their residents. Just as daily living, employment, education and mental health supports are factored into assessments of the individual’s community-based needs, so too must sexuality be incorporated into the planning of a resident’s treatment plan, with services administered as appropriate to the resident’s evolving needs.364
Federal regulations require that states set guidelines to ensure that each individual recipient of HCBS waiver services is individually assessed by the agency that provides the service to determine what supports and services are needed to develop, maintain and strengthen skills for more independent living.365 To comply with these regulations, group homes, for example, work together with the HCBS waiver recipient to identify the individualized services that are most appropriate to their needs, which is then incorporated in an individualized plan of service specific to a resident’s needs and goals.366 This inquiry involves input and deliberation with the resident and the treatment team that is responsible for providing supportive services, and that may include other “appropriate individuals”367 such as social workers, the group home’s supervisor and any family supports.368 The services identified are then administered to the resident.
For Julia R.,369 it took months of litigation for her support treatment professionals, social worker, and others in charge of her plan of care to agree to meet with her to revise her individualized service plan so that it included appropriate sexuality services aimed at addressing her desire to get married and start a family. It is through this mandated, individualized plan-of-service process that group homes can conduct assessments of a resident’s interest in issues related to sexuality and determine what services may be necessary to support a resident’s particular goals.370
The second modification would require group homes to offer sexuality services under an existing HCBS waiver, or through other funding sources, to those individuals who qualify for and are interested in them. For example, thousands of waiver services may be offered through a select number of HCBS waivers. In one study, 2,850 waiver services were delivered through 111 waivers.371 Sexuality services could fall into any number of the categories below:
residential habilitation; individual goods and services; prevocational; transportation; self-advocacy training; day habilitation; community transition supports; respite; health and professional services (crisis, dental, clinical and therapeutic services, nursing and home health); supports to live in one’s own home (companion, homemaker, chore, personal assistance, supported living); care coordination; adult day health; specialized medical and assistive technologies; financial support services; family training and counseling (family training and counseling, family supports); recreation and leisure; and supported employment.372
In ascertaining the reasonableness of this modification, an inquiry could be made into whether waivers for “adaptive skill development,” “adult educational supports,” and “social and leisure skill development”373 may be utilized by the group home to provide individualized sexuality services to residents who are seeking sexuality services and are already eligible to receive services under these specific waivers.
Furthermore, service providers could test whether sexuality services may be administered through other funding sources utilized by the group home, or through another HCBS waiver program.374 By way of example, YAI is able to provide sexuality services, in part, through a grant from New York State’s developmental disabilities agency family support contract (specifically for people who live with families in Manhattan) and as part of bundled services under HCBS waivers.375 Similar to the argument presented by plaintiffs in Lane, a request for sexuality services is not a request for a guarantee that adults with intellectual disabilities will, in fact, gain the skills and requisite capacity to engage in sex and intimate relationships; rather, the request asks that service providers give individuals the opportunity to access support and services to which they may already be qualified to receive.376
Group home staff and administrators can access available courses and training on how to provide sexual education to their residents. Tailored sex education has “positive effects . . . on knowledge, skills, attitudes, and behaviors of adults with [intellectual disabilities]”377 and has proven successful to “improve capacity to make sexuality-related decisions.”378 As one researcher noted, sexual education is a “mechanism to promote the ability to make good choices and empower” intellectually disabled adults.379 Further, the development of decision-making skills through sex education contributes to the ability to make knowledge-based choices and “reinforce[s] the decision to act for the good of one’s health and well-being,” contributing to “reducing vulnerability” and “inappropriate sexual expression.”380 There is, for example, a program specifically designed to train providers on how to teach intellectually disabled adults about issues of sexuality: Planned Parenthood of Northern New England and Green Mountain Self-Advocates’ Sexuality Education for People with Developmental Disabilities curriculum.381
The final modification would require group homes to create or adapt policies and procedures that unpack the bias, paternalism and ableism that drives group home decisions in matters of sexuality. Studies reflect that in-service training on sexuality services and the implementation of a positive sexuality policy have “the potential to change the culture of the group home to one that is more accepting and has more positive attitudes towards sexuality for individuals with intellectual disabilities.”382 Resources may include in-person and internet-based trainings for agencies and organizations on navigating issues of sexuality and intellectual disability and on becoming sexuality educators who serve the intellectual disabled population.383
2. Overcoming the Fundamental Alteration Defense
In the years following Olmstead, courts have closely followed the Olmstead plurality to determine the circumstances under which a modification is appropriate.384 Courts will not interfere with a state’s administration of its community-based treatment program if there is evidence of a comprehensive or effective plan to ensure individuals with disabilities are receiving services in integrated settings.385
Courts approach the fundamental alteration analysis differently dependent on plaintiff’s requested modification in integration mandate challenges. In Pennsylvania Protection & Advocacy, Inc. v. Pennsylvania Department of Public Welfare, the court examined whether the state isolated disabled residents in institutions rather than provide persons with available community-based treatment.386 There, the courts considered the state’s budgetary constraints and examined whether the state “developed and implemented a plan” to comply with the mandates of Title II and Section 504.387
In finding the state’s fundamental alteration defense insufficient, the court pointed to several factors. The court noted the failure of the state to establish how providing community-based services to plaintiffs would result in the reduction of services to other institutionalized individuals.388 The state also did not present evidence of any unsuccessful attempts to access additional funding to comply with integration mandates, or show a commitment to effectuate a plan to bring its actions in compliance with Title II and Section 504 in a timely manner.389 Lastly, the state could not demonstrate that it “responsibly spent its budgetary allocations” toward compliance with the community integration mandates.390
In Steimel, as noted earlier, the issue was whether the state could reduce the number of community-based hours available to those who were previously eligible, effectively confining persons to their homes. The court reduced the fundamental alteration analysis to the following question: “what effect will changing the state’s practices have on the provision of care to the developmentally disabled, taking into account the resources available to the state and the need to avoid discrimination?”391 The court rejected the state’s argument that its waiver eligibility requirements, which limited the number of people who could access an increased palette of community-based services, were necessary for the administration of the state’s waiver program.392
In rejecting this argument, the court relied on the ADA regulations to find that the state could not “impose or apply eligibility criteria that” would “screen out” disabled individuals from accessing services unless such criteria are necessary for the provision of that service; there were no such criteria, in this case.393 The court also found no evidence that apportioning of the waiver services to enable qualified disabled individuals to access additional community-based treatment would increase costs or fundamentally alter the state’s waiver program.394 The following section proposes modifications to address the unjustified sexual isolation of group home residents.
In challenging the proposed modifications, group homes would have to establish that they do not have the resources to adequately assess group home residents for sexuality services; provide appropriate sexuality services; and train staff and administrators through the implementation of policies and procedures that address issues of sexuality and intellectual disability. Group homes ultimately bear the burden under Section 504 to prove that modifications to their programs, services or activities related to sexuality will significantly burden the ability of the group homes to provide equal services to other group homes residents.395
The proposed modifications, supra, identify concrete steps and tools that group homes may take to satisfy the affirmative duty under Section 504. The group home would have to establish that the increased cost is too burdensome in relation to the modification sought. Courts have determined that the fundamental alteration analysis requires a “holistic”396 or complex “fact-intensive”397 analysis to determine whether applying these changes may alter the group home’s ability to serve all of its residents.
Concerns related to costs are not enough to overcome the modification requirements under Section 504: Courts have rejected the argument that financial and budgetary constraints alone absolve the entity of the affirmative duty under the fundamental alteration defense, unless it can be shown that such “costs would, in fact, compel cutbacks in services to other Medicaid recipients.”398 As one court noted, if a state could satisfy the fundamental alteration defense by arguing that a modification would be too costly, such a broad reading of this defense would “swallow the integration mandate whole.”399 Congress recognized—and courts have agreed—that compliance with the integration mandate may require “substantial short-term burdens, both financial and administrative”400 to achieve the goal of community integration.401 Further, group homes that fail to take meaningful measures to avert the sexual isolation of group homes residents are also unlikely to meet their burden under the fundamental alteration defense when considering the additional factors outlined in Pennsylvania Protection & Advocacy, Inc.
Group homes may further assert that the “normalization” of sexuality through the modification of policies and procedures may place other group home residents at risk for sexual abuse or exploitation by other residents, or expose the group home to liability, thereby fundamentally altering the ability of group homes to protect their residents and their staff. Social science research challenges the argument that increased knowledge, information, and awareness of sexuality exposes group home residents to sexual abuse or exploitation.402 One court recognized that the “effective hospital policing” and “[t]he threat of tort liability for insufficient vigilance in policing patients’ sexual conduct” is not enough to “deprive them of the freedom to engage in consensual sexual relations.”403
B. Where Do We Go from Here?
There are practical challenges to providing appropriate modifications, including the lack of sexual education training provided to support workers of adults with intellectual disabilities404 and the limited number of HCBS waivers and other funding dedicated specifically to sexuality services.405 Further, the State is complicit with group homes in the sexual isolation of intellectually disabled adults by failing to provide resources to support access to sexuality supports and services.
1. The Role of State Agencies in Supporting the Sexual Rights of Adults with Intellectual Disabilities
A recent study examined 111 HCBS waivers to find that less than 12% specifically include sexuality services for intellectually disabled adults.406 The majority of these waivers focused primarily on how to address negative sexual behaviors.407 Two known outliers are New Mexico and the District of Columbia, which provide positive sexuality services to adults with intellectual disabilities through the HCBS waiver program.408
Any fundamental change in how group homes approach strategies to support intellectually disabled adults in decisions related to sex and intimacy must begin at the state agency level. State agencies, such as the Office for People with Developmental Disabilities in New York State, wield tremendous power as the gatekeeper of the HCBS waiver program. State agencies can, for example, commit time and money to developing sexual education resources and require staff and administrators of group homes, other residential settings, and service provider agencies to undergo trainings to gain skills for navigating the topic of sexuality with adults with intellectual disabilities. The state agencies can also work to shift the culture of group home settings towards supporting the notion that sexual rights are an integrated aspect of community integration through the implementation of proactive sexuality policies.
2. Developing a Sexuality Policy
YAI’s Relationships and Sexuality Policy (YAI Sexuality Policy), included with this Article online as Appendix 2, provides guidance for other agencies that administer supports and services to adults with intellectual disabilities in developing policies that proactively, and affirmatively, address sexuality. The YAI Sexuality Policy details YAI’s philosophy and approach to addressing sexuality in a positive and proactive way, and provides instruction as to the role and responsibility of the agency and staff in supporting the sexuality of the intellectually and developmentally disabled population that YAI services.
The YAI Sexuality Policy approaches sexuality through several lenses that more closely define the human experience. For example, the policy describes “[s]exuality” as “an integral part of each individual” and goes on to define “[i]ndividuality” as including “sexual orientation,” “[g]ender [i]dentity,” and “[t]he right to be supported to develop loving and safe friendships and relationships.”409 The policy also identifies the philosophy of the organization and its support of “healthy and functional expressions of . . . sexuality” and goes into greater detail about issues including consent, friendships and relationships, education and training, sexual expression, contraception, reproduction, and sexual health, including HIV/AIDS, sexual behaviors, and family. The YAI policy further details the role of YAI’s staff, and the agency, itself, in adhering to the policy.410
Developing a policy that recognizes sexuality as encompassing issues such as consent, relationships, friendships, sexual orientation, gender identity, and family can provide a common language and understanding among agency staff and administrators as to the varying degrees of sexual expression and their shared roles and responsibilities in supporting the healthy sexual choices of intellectually disabled adults. A sexuality policy can also assist in eliminating the personal biases agency staff or administrators may have concerning what constitutes healthy sexuality. This, in turn, can help create a uniform framework for the agency philosophy—including expectations for how employees are to approach issues of sexuality with intellectually disabled adults.
According to Consuelo Senior, Assistant Coordinator of Sex Education Learning & Talent Development at YAI, prior to taking steps to implement a sexuality policy, an agency must first secure support from the executives of the agency, including all of the interrelated departments within the agency—such as residential services (including group homes), day habilitation programs, community habilitation, recreation, and in-home services.411
Agency executives must exercise a commitment to implementing a sexuality policy that supports the healthy sexuality of the intellectually disabled adult population that the agency serves. Senior explains, “when there is a buy-in from executives on the agency board, it frames the philosophy of the program and it shows that they are invested in ensuring that the sexuality policy is followed.”412 This commitment must include educating and training agency administrators and staff on sexuality and intellectual disability, educational programming for intellectually disabled adults who wish to exercise choices around sexuality, and a recognition that sexuality constitutes a range of human emotions and choices not limited to sexual intercourse.
To successfully develop a sexuality policy, agencies can take steps to assemble a cross-section of individuals from the disability and legal community to help strategize around the content of the policy. These individuals may include experts in the field of sexuality and intellectual disability, the state agency that administers HCBS waiver services to individuals with intellectual and developmental disabilities, legal counsel, the agency’s compliance department, and self-advocates.413
An agency can also create an independent body to oversee the implementation of the sexuality policy. For example, YAI created the Sexuality Rights and Advocacy Committee for this purpose. The Committee examines all sexual consent determinations, identifies what sexuality training is needed throughout the agency, gathers input from group home residents as to what sexuality supports are needed, identifies gaps in the sexuality services offered (such as a need to develop support groups for the lesbian, gay, bisexual, transgender, and queer population), and ensures that there is an annual, mandatory staff training on the YAI Sexuality Policy. A committee overseeing this process can also ensure that the training includes review of the sexuality policy’s content, roleplaying exercises and scenarios based on the policy, and general training on how to avoid infusing biases into dealing with a range of sexual issues and intellectually disabled adults.
Conceptualizing sexual isolation as a violation of the integration regulation under Section 504 places sexuality on equal footing with other supports and services that are recognized as essential to support full community integration.414 Recognizing sexuality as an integral aspect of community integration can further “challenge the assumption that individuals with intellectual disabilities always need protection from sexual abuse”415 and that such protection requires “denying their sexual lives.”416 The shift toward sexuality as a positive right could follow the outcomes in Lane and United States v. Rhode Island, requiring group homes to provide affirmative supports and services to ensure that sexuality and the ability to form and maintain intimate relationships are not subject to indiscriminate policing and/or a lack of community-based supports.
The majority in Olmstead rejected defendants’ claims that Title II did not apply because plaintiffs failed to identify a similarly situated class of institutionalized persons who were given preferential treatment.417 In rejecting this argument,418 the majority acknowledged the very personal harm of unjustified institutional isolation noting, “Congress had a more comprehensive view of the concept of discrimination advanced in the ADA.”419
It is this more comprehensive view of Title II of the ADA that is opening the door to the modern evolution of the Olmstead integration mandate. In his opening sentence in Obergefell v. Hodges, a United States Supreme Court case establishing that same-sex couples had a fundamental right under the Fourteenth Amendment to marry, Justice Anthony Kennedy writes, “The Constitution promises liberty to all within its reach, a liberty that includes certain specific rights that allow persons, within a lawful realm, to define and express their identity.”420
As a civil rights statute, the ADA came with a similar promise, embodying the notion that disabled persons will have the ability to define and express their identity through “equality of opportunity, full participation, independent living, and economic self-sufficiency”421 outside the confines of institutionalization and isolation—and “to pursue those opportunities for which our free society is justifiably famous.”422 The Olmstead decision brought this promise closer for persons with disabilities. But this promise cannot be fully realized if sexuality is silenced in the goal toward community integration.
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