Pure Social Model/Demedicalization

Drawing on the social model, this frame focuses almost exclusively on issues of rights and accessibility. In the process of demedicalizing disability, the organization de-emphasizes delivery of information on medical practice and treatment, bio-medical research and policy, and collaboration with medical professionals. Organizations may also directly challenge the medical perspective and authority claims of medical professionals.

The National Organization of Parents of Blind Children (NOPBC) is an example of an organization that primarily uses a social model/demedicalized frame. The website offers very little medical information (e.g., information on diagnosis, biological causes of blindness, testing, treatments, clinical trials), no discussion or funding of medical research, nor any legislative agenda items focusing on medical advancement. Rather than promote the medical paradigm, when speaking about expertise the website notes that its broader organization, the National Federation of the Blind (NFB), provides access to 50,000 blind people to serve as mentors and role models with information about blindness.

The information provided centers on issues of equality and opportunity, such as education, employment, and on the "'skills and tools of blindness" (e.g., Braille, technology, training, empowerment), which are seen as "essential for the child's success both at home and at school" and best taught by blind people (not sighted professionals). NOPBC believes "that blind people who are taught and who embrace effective non-visual skills, whatever their degree of eyesight, are capable of living a full and satisfying life" (The National Organization of Parents of Blind Children, n.d.). In other words, blind people need the opportunity to thrive as blind people, not contingent on cure.

NOPBC functions as a division of the NFB (one of the organizations in the National Disability Leadership Alliance), and the NFB website similarly rejects the medical model: "Every day we raise expectations of blind people because low expectations create obstacles between blind people and our dreams; blindness is not what holds you back." Led by blind activists, their mission is to completely integrate blind people into society as equals, and they focus on issues of anti-discrimination and access, not medical intervention. Legislative priorities include issues such as access to technology and publications, employment, air travel equity, voting, and parental rights, with very little attention to medical advancement.

Medicalized Support of the Social Model

Another frame uses a limited medical model to support what is primarily a social model. Many people with disabilities and their family members are concerned with issues of social participation, opportunities, and rights, but also use the medical system to claim rights and access funding and services that support participation, such as community habilitation, vocational rehabilitation, and personal assistance. These activists challenge medicalization but realize their dependence on it and its power to fund targeted services and supports for people with disabilities. This "devil's bargain" occurs with many achievements of the Disability Rights Movement, such as the Americans with Disabilities Act that relies on diagnosis to access rights and, in defining disability, both challenges and reinforces a deficit approach (Silvers & Francis, 2000). Similarly, Section 504, one of the earliest civil rights accomplishments, is part of the 1973 Vocational Rehabilitation Act, and therefore uses the laws guiding medical rehabilitation to secure anti-discrimination legislation (Scotch, 1984). The Individuals with Disabilities Education Act, which grants students with disabilities a free and appropriate public education, also relies heavily on diagnosis and evaluation by medical experts to legitimize claims for accommodations and supports.

United Cerebral Palsy (UCP) and The Arc, two of the nation's largest OLPs, both exhibit this approach. Each shows a clear commitment to the social model. Although most children with cerebral palsy receive some sort of medical treatment or therapy, medical treatment is not UCP's main priority. In keeping with the social model, UCP's home page leads with rotating images that declares: "For people with a spectrum of disabilities, our affiliates advance independence and full citizenship[,]… For people with a spectrum of disabilities, life should be without limits[,]… For people with a spectrum of disabilities, the civil rights movement is not over" (United Cerebral Palsy, n.d.). Their history page criticizes the role of medical professionals in institutionalizing and stigmatizing people with disabilities, and explains that UCP's contemporary priority is to open doors to the community through supporting advancements in areas such as home ownership, health care reform, inclusive education, and competitive employment.

Along with their adherence to the social model, UCP and The Arc also have a significant focus on medicalized systems such as Medicaid due to their role in institutionalizing and funding community-based supports and services. During the summer and fall of 2017 the Affordable Care Act and Medicaid were threatened by repeal efforts and budget cuts, and there was an outcry to protect Medicaid-funded services for people with disabilities. The right to live in the community directly hinges on programs funded through Medicaid (Grossman, 2011). As another example, UCP worked on the RAISE Family Caregivers Act which directs the Department of Health and Human Services to develop a strategy to support caregivers providing services in the community. These foci are not principally about direct medical treatment per se, but rather use the bureaucratic framing of services as treatment and the medically oriented infrastructure of policy and funding to support community opportunities and access for people with disabilities.

OLPs are not alone in their willingness to use the medical infrastructure to advance an activist agenda. The most vehement of the disability activist organizations, such as ADAPT, work relentlessly to shift Medicaid funding to community-based long-term care rather than institutional care. Even the largely demedicalized National Federation of the Blind supports the use of vocational rehabilitation, which relies on medical diagnosis and documentation, to gain access to community-based, competitive employment rather than low-wage work in sheltered workshops. Organizations operate within a broad political environment that tie rights and services to medical gatekeeping, and disability organizations have strategically used this association rather than solely pursuing a social model.

Health Care Equity

The medical model and social models are blended in a unique balance in the fight for health care equity. Accepting and valuing disability does not mean that one does not deserve access to high quality health care on one's own terms. Access to high quality primary and specialized care is limited for people with disabilities in America. Doctors may refuse to see patients with significant disabilities who may need extra time or supports to receive care, and/or they may choose not to accept Medicaid, further restricting access to health care for people with disabilities (Ervin et al., 2014; Krahn et al., 2015). Other barriers to health care abound. It is, therefore, not surprising that many OLPs, including The Arc, UCP, and NAMI, fight to ensure that people with intellectual, developmental, and mental disabilities are not disadvantaged in accessing routine and specialized care. The Arc position states, "The health care system must be aligned to principles of nondiscrimination, comprehensiveness, continuity, appropriateness, and equity. Both comprehensive public and private health insurance must provide for necessary health care without regard to the nature or severity of disability, pre-existing conditions, or other health status" (The Arc, "Life in the Community," n.d.).

For The Arc, health care equity is one of many equity issues. For NAMI, access to treatment as a fundamental right of people with mental illness is front and center in their platform. NAMI challenges structural biases built into the funding of healthcare that prioritize physical health and deprioritize mental health. They are at the forefront of fighting for "mental health parity," the idea that health care related to mental illness should be covered by insurance plans to the same extent as health care related to physical illness. NAMI notes that without parity, "mental health treatment is often covered at far lower levels in health insurance policies than physical illness, which means people do not get the care they need to experience recovery" (National Alliance on Mental Illness, "Parity for Mental Health Coverage," n.d.). Organizations like ADAPT, The Arc and UCP have fought to remove other structural biases in health care, such as the "institutional bias" in Medicaid funding. Medicaid funding prioritizes institutional care, and many disability-activist groups have fought to ensure that funding flows to community-based treatment/services.

Enhancing access to health care may also mean working with and training medical personnel to confront their biases. The National Down Syndrome Society (NDSS), for example, makes a particular effort to engage with medical professionals and shape medical discourse to improve outcomes for people with Down syndrome. Because of the physical markers of Down syndrome prenatally and at birth and the historic stigma against this impairment, children with Down syndrome are particularly susceptible to early institutionalization, out-of-family placement in adoption services, abandonment, and abortion. Medical discourse and practice heighten these risks by defining Down syndrome as a birth "defect," promulgating testing for defects, neglecting to provide positive information about quality of life and community resources, and discounting the potential for a successful and meaningful life for people with Down syndrome (Parens & Asche, 2000; Thomas, 2017). In response, NDSS trains health care professionals to communicate the value of diverse lives to prospective and recent parents.

Outcomes for Deaf children are also shaped heavily by interaction with medical professionals. The American Society for Deaf Children (ASDC) states that all D/deaf children have a right to be valued and respected regardless of technology usage, to meet and socialize with other deaf children, and to achieve fluency reading, writing, and to their ability, speaking English; yet they recognize that professionals often fall short of advancing these ideals for deaf children. Thus, ASDC directly engages with medical, audiology, and educational professionals to enhance their capacity to be informed of the successes from all walks of life; to recognize the benefits of early language including early ASL; to connect parents with other parents, Deaf adults and children; and to provide information on schools and organizations related to Deafness. They do not eschew medical intervention or technology, but also argue that intervention/technology does not replace or diminish the need for Deaf culture and ASL.

Medicalization toward Mitigation and Social Inclusion

A fourth configuration is a pattern in which diagnosis and active medical intervention/treatment are seen as primary routes to greater social participation, inclusion, and status. This frame emphasizes the power of treatment to enhance normalization and decrease physically and socially problematic aspects of a condition, helping a person better function and be accepted in society (Berube, 2016). OLPs using this frame advocate biomedical identification and treatment as a means toward mitigation, normalization, and social inclusion. Unlike the three prior frames, in this frame medical intervention is valued, putting it somewhat at odds with the agenda of core OLPwDs.

NAMI provides an example of an organization that values diagnosis and treatment as pathways to personal well-being and social inclusion. NAMI's mission statement reflects a broad array of goals towards "building better lives for the millions of Americans affected by mental illness, especially those with serious mental illness," including attention to treatment. NAMI "firmly believes that individuals with mental illness should have access to clinically appropriate medications, evidence-based services and treatment, including psychotherapy, that are provided in a person-centered approach," and access to a comprehensive array of treatment, services, and supports (National Alliance on Mental Illness, "Policy Platform," n.d.). For NAMI, increasing access to effective, evidence-based treatment helps to remove the stigma of mental illness, whereas a refusal to acknowledge the value of treatment and medication is itself stigmatizing, subjecting people to a lifetime of suffering without recourse to the same kinds of supports readily given without stigma to people with physical conditions.

They highlight the importance of providing pathways to stigma-free treatment in many ways. For example, in a feature called "You Are Not Alone," NAMI members tell personal stories of mental illness. In one such story, "How Invalidating my Bi-polar Disorder Invalidates Me," the author states the many myths s/he must endure such as "you don't need medication," "just think positive," "just calm down," and "you need to do yoga." Those unfamiliar with bi-polar, she writes, "have no idea how frustrating and exhausting the years of trial and error in medications and treatment can be. Still, I continue to seek treatment because the symptoms of not treating the illness were far worse… For the first time in a long time, I am learning to deal with my feelings, emotions, and moods" (National Alliance on Mental Illness, "How Invalidating," n.d.). In another featured blog related to minority health, the blogger discusses the stereotype that one can "pray away" mental illness, and instead reassures people that treatment should be an acceptable way to live more active and successful lives.

Autism Speaks promotes the medical model even more strongly (as will be discussed more in the next section). Its website is structured to provide information on diagnosis and treatment, and Autism Speaks' targeted outcomes for the next 10 years include: "a better understanding of the causes and typology of ASD"; diagnosis "before the age of 2"; "access to appropriate intervention, services, and resources immediately following diagnosis" and "throughout their lifetime." Their priorities do not focus solely on a medical model. They include, for example, the goals of a better quality of life, providing transition planning for independent living, and providing lifelong supports. That said, their discourse clearly values the role of medical research and intervention as a means to increase quality of life and independence. In a statement on their "commitment to everyone on the autism spectrum," they state, "… many aspects of autism can be significantly debilitating, and that is why efforts to improve and deliver scientific breakthroughs are so important, with the goal of enabling those on the autism spectrum to be the best they can be—with autism" (Autism Speaks, "For the Record", n.d.).

Mitigation focuses on long-term therapies, supports, and tools to enhance quality of life and inclusion, and many people with disabilities welcome access to these methods when they are useful and chosen. Yet therapies and medicalized supports also have the potential to feel coercive to people with disabilities for whom recovery is required to feel culturally valued and/or to access rights (Clare, 2017). Evans (2017) documents, for example, the ways that people with mental health disabilities are forced to meet "measurable outcomes" (e.g. attending support groups, medication compliance, displaying appropriate behavior) in order to obtain desired housing and services. Thus, social service agencies may use the stages of "recovery" as a way to demand compliance and distribute privileges and basic liberties accordingly. Moreover, medical intervention may come to be seen as the only or the best path to inclusion and quality of life, a view that OLPwDs explicitly critique.

Medicalization toward Cure and Prevention

This final frame related to the social and medical models prioritizes a medical understanding of the condition at hand and imagines a world that is best without the diseases that "plague" it. Rather than helping one live successfully with any given condition, the goal is instead to remove the condition. This discourse may still challenge the medical community, but the challenge is a call for more medical intervention — more research, treatment, drugs, and prevention. A cure/prevention approach assumes that cure will re-establish a person's access to valued social roles, an alternative to prioritizing social supports, issues of social equity or participation. Eradication is the fundamental goal.

Parents of children with diseases, such as cancer and HIV, tend to have a strong commitment to cure and prevention. The American Childhood Cancer Organization, for example, is "dedicated to fighting this last great disease killer of children." The goal is to "conquer" cancer, and, in the meantime, to ease the "suffering" of children with cancer and their families. Their "Get the Facts" section focuses on medical issues including diagnosis, treatment options, survivorship and bereavement, and cancer statistics. Their advocacy includes building partnerships with "childhood cancer champions;" collaboration with medical experts, pharmaceutical companies, and government; promoting engagement of lawmakers in the "war" against childhood cancer; and encouraging funding for clinical trials, drug creation, and targeted therapies. In this "war," the medical community is clearly an ally, although not always an unproblematic one. The problem, however, is seen as the lack of medical/research attention to childhood cancer and the solution is more medical research related to children, and more access to treatment for children.

This model may seem appropriate for cancer, a potentially lethal illness, from which many children experience remission and even cure, and few people would argue that having cancer is a valued form of human diversity. The situation is very different when the model is applied to disabilities that activists see as a valued and lifelong form of human diversity.

Autism Speaks has drawn particular ire from OLPwDs for its reliance on disease discourse in relation to autism and its focus on cure rather than supports and social justice. Autism Speaks describes autism as a disease, akin to cancer or AIDS. Indeed, the language of "epidemic" is common to raise alarm and dollars for autism bio-medical research (McGuire, 2016). Here the framing as illness arouses great concern because autism is typically considered a life-long disability for which there is no cure, akin to developmental disabilities (e.g., intellectual disability, cerebral palsy), rather than an illness. For OLPwDs, rights, supports, and services enhance quality of life for people with disabilities. Money and political capital poured into the hope of cure, they argue, have yielded little in the way of improved quality of life and instead increases stigma. Neurodiversity activists in the Autism Self-Advocacy Network, for example, challenge whether a cure is desirable, and instead posit autism as a part of human diversity, a different way to think, rather than a defect to be prevented (Autism Now Center & ASAN, 2014; Bascom, 2012).

The 2009 Autism Speaks film, I am Autism, offers a striking example of the problems of applying an illness perspective to disability. The film was written and produced by parents of children with autism to raise awareness of a "global autism epidemic" (McGuire, 2016). This film presents autism as a thing—a disease—separate from one's child that invades and can be identified, attacked, and killed, a thing that vigilant parents can be victorious over and rescue their real children, their non-autistic children. As we can kill the cancer and recover our suffering children, we can kill the autism and recover the non-autistic child. But autism is a constitutive part of someone; it affects the way they think, interact, and perceive. This is not to reduce people to their autism, but it is to say that people live with and grow as people with autism. Although Autism Speaks claims to fight against stigma, its representations of autism tend to be dark, frightening, and highly stigmatizing.

Because Autism Speaks frames autism as a disease, their homepage links to a variety stories from a bio-medical model, including a report regarding health, information on diagnosis and learning the signs of autism, and news of a genome project. Their research priorities are all medical: genome sequencing, global public health, the Autism treatment network, pre and postdoctoral fellowships that bridge clinical and laboratory science, and the Preclinical Autism Consortium for Therapeutics to support clinical trials. The largest portion of their funding is invested in bio-medical scientific research, much of it with the goal of eradicating autism. Their advocacy priorities list investment in research first, then legislation and services for adults to gain the support they need to live in the community as independently as possible.

In contrast, the depiction of disability as a disease that destroys children's and family's lives is almost never employed in modern campaigns by The Arc or UCP. That said, these organizations that focus more heavily on the social model also retain some aspects of the bio-medical model used to pursue cure and prevention. Although NDSS recently changed its mission statement to brand itself as "the leading human rights organization for all individuals with Down syndrome," it has a long history of supporting medical research, clinical trials, and most recently initiatives like chromosome mapping and an NIH registry of individuals with Down syndrome. The Arc also has a long history of promoting medical research, including research on fetal alcohol syndrome, specific chromosomal disorders, human genome mapping, and gene therapy. Projects like genetic mapping and gene therapy are routes to prevention and eradication.

The tension between trying to value people with a disability and pursuing the eradication of that disability is challenging. The politics of cure/prevention positions the disability as inherently negative, something to be avoided, a thing that causes suffering. Simultaneously, OLPs assert the value of people with that disability and include them as part of the human diversity to be respected and supported. Over time, as they prioritized the fight for civil rights and inclusion, The Arc and NDSS diminished their bio-medical focus. Autism Speaks, a more recent organization, places the biomedical model front and center. Although they recently removed the word "cure" from their mission statement in recognition of the sharp criticism they received from the disability activist community, Autism Speaks remains committed to an agenda that prefers a world without autism, thereby undercutting its ability to embrace neurodiverse people as valued and respected members of society.

Integration

An integration agenda seeks the full and equal participation of people with disabilities in all of society's institutions, organizations, and valued social roles. The National Organization of Parents of Blind Children (NOPBC), for example, clearly asserts the value of integration. Their mission is the "complete integration of the blind into society on the basis of equality." In their discussion, "where do blind children go to school?", they state, "Most children who now attend the residential schools for the blind have other disabilities in addition to blindness. Blind children in public schools are in regular classrooms and use a cane and read and write Braille. These blind students might work some of the time with a special teacher who would also help get the special books needed by blind children. These Braille books would contain the same things your books would have in print. Blind children take the same classes that the other kids the same age take." (National Organization of Parents of Blind Children, "Questions Kids Ask," n.d.). They criticize the use of sheltered workshops and instead advocate competitive employment opportunities. Blind skills and technologies are used, as well as accommodations and accessibility, to facilitate integration. Learning these skills, according to NOPBC, does not require nor justify long-term segregated education or segregation in other settings.

The Community Imperative, a philosophical and political statement demanding inclusion espoused by many disability organizations including The Arc and UCP, offers another example of the value placed on integration. The Arc's position statement on inclusion reads: "All people benefit when persons with intellectual and/or developmental disabilities are included in community life. People with disabilities should be welcomed and included in all aspects of our society. This includes public activities, programs and settings, and private establishments which are open and accessible to members of the general public. People with disabilities should receive the supports they need to participate actively in community life without having to wait" (The Arc, "Inclusion," n.d.). The Arc believes that the specific opportunities children with disabilities should have include: to live in a family home, to have access to needed supports, to enjoy typical childhood relationships and friendships, to learn in their neighborhood school in a general education classroom that contains age peers without disabilities, to participate in the same activities as children without disabilities, to play with other children in community recreation, and to participate in religious observations and practices. They believe that adults with disabilities should have relationships of their choosing with individuals in the community who are not paid staff or family, live in a home where and with whom they choose, have access to needed supports, engage in meaningful work in an inclusive setting, participate in recreation and leisure available to the general public, and participate in religious observances and practices of their choosing.

The pursuit of inclusion envisions a community composed of diverse people with diverse needs, in which the community values all members and provides the avenues needed to support all members in meaningful participation. Anything less is discrimination.

Least Restrictive Environment and Negotiated Access

Rather than full inclusion, Least Restrictive Environment (LRE) is a philosophy built into civil rights laws like the Individuals with Disabilities Education Act (IDEA) and into the service system for developmental and mental disabilities that states that people should have the maximal freedom possible given their capabilities and needs. This falls short of full inclusion, which is seen as an aspirational goal which may never be reached. In principle, LRE demands full inclusion unless there are clear reasons to restrict it, but sociologist Steven Taylor (1988) noted that in practice it has been used liberally to legitimize segregation when deemed by experts and parents to be in a disabled person's best interests (Evans, 2017).

A system based on LRE offers a "continuum" of services which vary in the levels of integration and freedom. For example, housing services might offer supports for independent living (full integration), small group homes with some staff supervision and restrictions in the community, group homes with significant supervision and restrictions with less community interaction, and facilities that are totalizing in nature such that, for example, agency rules dictate schedules and one has few contacts outside the disability service system. People with disabilities potentially move along the continuum based on professional assessments of their skills and successes at integration. According to OLPwDs, in practice this system too often presumes that restriction is acceptable, forces people to prove that they are worthy to be in the community, fails to teach people independent skills to advance them in the continuum, and determines placement based on open "slots" rather than a process that takes seriously why and when we should restrict liberty.

The Arc and UCP on the national level have moved increasingly towards advocating for full integration, but historically and still today retain strong elements of a continuum model in many of their local service delivery systems. On the one hand, both have supported the Community Imperative and pushed for integration in education, work, and community services. On the other hand, The Arc has a decentralized structure, and many local Arcs run disability-specific programs, including sheltered workshops, day programs, and agency-organized group homes. Placement in these settings often is determined by available "slots," funding streams, and professionally assessed skills, rather than a presumption of full inclusion and meaningful consumer choice. For self-advocates, these systems are particularly problematic when there is an encompassing system of large-scale, disability-specific settings, so that "consumers" move from one disability-specific setting to another, with little interaction with the community outside of the disability service sector and paid professionals, and with little control over these "services" and the content of them.

Shifting between the positions of full inclusion and LRE creates internal conflict within these organizations. The Arc's position on sheltered workshops and day programs offers a vivid example of internal conflict. Nationally, The Arc is moving away from sheltered workshops and towards support of competitive and integrated workplaces, and many state-level Arcs reflect national trends. For example, New York's Arc supported the move toward competitive employment, and several county-level Arcs began the process of transitioning their work programs to deliver integrated and competitive employment programs, such as the Rockland Arc which began converting its sheltered recycling workshop into an employer for both disabled and non-disabled workers. Not all local Arcs, though, were convinced of the value or possibility of full integration. Putnam County Arc Executive Director Susan Limongello (2014) cautioned, "This upcoming transition will force many people into jobs that they may not want. Their current situation [including employment at a sheltered workshop] affords them real work and successful employment" (quoted in Matthews, 2014). Hanns Meissner, executive director of the Rensselaer County Arc, stated, if not for sheltered workshops and day programs, "They might otherwise be in nursing homes" (quoted in Karlin, 2013). In other words, ending sheltered workshops might lead to negative, rather than positive, consequences if people cannot find or successfully fulfill the demands of competitive employment, and they may instead end up in even more restrictive and unfulfilling programs. Given a lack of confidence in both the ability of all people to hold competitive community-based employment and the willingness of employers to include and accommodate diverse employees, many parents fiercely defend sheltered workshops as an appropriate and valuable service to foster economic productivity and social participation.

In his study of The Arc, Larry Jones (2010) notes that local Arc chapters tend to be more conservative and parochial, more focused on service delivery, and are typically dominated by parents seeking benefits for their children as compared to the national and state-level organizations — levels which have more "cosmopolitan" leaders focused on advocacy and rights.

Disability Specific Services and Settings

Some OLPs operate within the LRE theoretical framework but focus their efforts on ensuring the provision of disability-specific settings. This approach is treated as a distinct frame, and there is a great deal of variability within this frame. In particular, some organizations advocate access to short-term disability-specific services in a disability-specific setting, while others advocate long-term disability-specific services and sites that tend to encompass the entirety of a person's lived experience (e.g., education, work, leisure, housing) over the life course. The former is far less controversial than the latter.

As noted earlier, the Deaf community stands apart from most grass-roots disability activist organizations. The Deaf community sees itself as a linguistic and cultural minority and, as such, demands the means to transmit its culture and language via Deaf education provided by Deaf educators in Deaf schools (Lane, 2006). In an information booklet for parents, the American Society for Deaf Children notes that "a center-based program brings a group of students with similar needs together in a centrally located school," with full access to ASL, accommodations, and involvement of Deaf adults. Hands and Voices, an organization of parents of Deaf and hard-of-hearing children, has no advocacy or policy branch, but it does offer resources including the National Association of the Deaf (NAD) statement on early access to ASL and inclusion: "Placement of all deaf and hard-of-hearing children in regular educational classrooms in accordance with an inclusion doctrine rooted in ideology is a blatant violation of the IDEA" (National Association of the Deaf, 2002). NAD has taken a strong stand against educational integration and instead promotes the use of Deaf schools, including residential placement. The value of Deaf education in a Deaf-specific setting is tied to fostering Deaf skills and culture, rooted in early association with the Deaf community and led by Deaf adults, leading to empowered adult integration across social arenas (e.g., employment, healthcare) facilitated by access to ASL interpreters. As this is a stance taken by the Deaf activist community to empower Deaf children and adults, it is seen as an acceptable choice by most OLPwDs although it challenges the integration mandate.

OLPwDs have a much more antagonistic view toward OLPs, such as VOR (formerly Voice of the Retarded), that fight to retain long-term, large-scale, disability-specific settings, including state-run residential facilities and sheltered workshops. Fighting against long-term, disability-specific settings is a core value of OLPwDs.

VOR and other organizations that use this frame see value in concentrating professional expertise, centralizing services, offering a high level of supervision, and creating an environment that they perceive to be safe. They argue, in light of LRE guidelines in federal law, that disability-specific settings are a required option and that disability-specific settings might be the most appropriate and least restrictive setting in which to serve particular people with disabilities. The VOR homepage, for example, explains to visitors "Your Legal Right to an Intermediate Care Facility": "Despite a deinstitutionalization effort by those opposed to congregate care, the ICF/IID program remains a legally enforceable federal entitlement under Medicaid" (Voice of the Retarded, n.d.). In other words, they criticize deinstitutionalization and present large, disability-specific residential settings as within one's rights, not a violation of them—the polar opposite of the message of activists with disabilities. This news is immediately followed by the heading, "Widespread abuse, neglect, and death in small settings serving people with intellectual disabilities." The accompanying story documents the range of "tragedies" that occur due to the "zest to move to a community for all" vision for people with developmental disabilities without adequately considering the ramifications of separating vulnerable people from specialized care and then doing away with a critical safety net (a/k/a deinstitutionalization). VOR activists share with OLPwDs concerns over lack of safety in the community; however VOR uses this concern to justify congregate care (with little attention to the abuses in congregate care) whereas activists with disabilities use this concern to demand more funding, training, and choice within the community.

VOR parents draw parallels between specialized education and care for people with intellectual disabilities and Deaf education (as well as retirement communities and other places where people with similar needs share services). The comparison falls flat for OLPwDs, however. In contrast with Deaf education, few disability-specific skills are taught in congregate care for people with intellectual and developmental disabilities (ID/DD). For people with ID/DD, the key educational issues are the pedagogical techniques, pace, and level of education, not the attainment of different skills such as ASL. Unlike Deaf schools, which employ significant numbers of deaf adults as teachers and administrators, agencies in the field of ID/DD rarely hire people with ID/DD in positions of power. Nor is there a focus on the dissemination of a disability culture. Instead, the goal is typically perceived as maximal normalization (attaining the greatest skills to fit within the typical culture) and/or separation. For OLPwDs, integration, not segregation, is the most effective path to participation and acceptance. And, unlike Deaf education, disability-specific services for people with ID/DD might encompass residential, work, and recreation, throughout the lifespan, creating a totalizing experience separate from people without disabilities (except for employees and volunteers) run by non-disabled professionals. Thus, support for a totalizing system of disability-specific sites for education, employment, leisure, residence, and other services for people with ID/DD is far more removed from the core of OLPwDs than support of Deaf education.

For organizations focusing on mental illness, the fight over integration is also very heated. Many people with mental illness can and do benefit from treatment provided in the community. Since deinstitutionalization, it has become difficult to institutionalize someone for mental illness. In most states, evidence of harm to oneself and others are the only legal bases for involuntary commitment. Under this standard, people with mental illness might be homeless, unsafe, unable to take care of their basic needs, and/or in distress and without appropriate treatment, yet still be ineligible for involuntary commitment. Some parents and family members have fought to loosen the legal requirements for involuntary commitment and to create a procedure for mandated outpatient treatment for some people living in community settings. NAMI executive director, Laurie Flynn, states, "many families with a schizophrenic son or daughter have been extremely distressed because the commitment laws mean they have to wait for a crisis before they can get help, and they have to become legal adversaries" of their children in the process if their offspring refuse help (quoted in Goleman, 1986).

NAMI's official position states, "States should adopt broader, more flexible standards that would provide for involuntary commitment and/or court ordered treatment when an individual, due to mental illness is gravely disabled, which means that the person is substantially unable, to provide for any of his or her basic needs, such as food, clothing, shelter, health or safety; or is likely to substantially deteriorate if not provided with timely treatment; or lacks capacity, which means that, as a result of the serious mental illness, the person is unable to fully understand–or lacks judgment to make an informed decision about–his or her need for treatment, care, or supervision" (National Alliance on Mental Illness, "Right to Treatment," n.d.).

In the case of involuntary commitment and treatment, the issue of integration versus disability-specific services is not at all related to an empowered choice to participate in a disability community or disability culture. Rather it imposes a disability-specific setting, and asserts medical authority and treatment on a person who resists such treatment and restricts their right to resist. Many NAMI advocates see this treatment as essential for protecting the safety and well-being of people with mental illness, imposing care until the person can better engage in self-care. Indeed, for many parents and siblings, the right to integration is a ridiculous notion if their loved one is homeless, off their medications, and/or in danger. Integration under those circumstances hardly seems empowered. However, support for involuntary commitment and treatment using any measure other than harm is far removed from the core of OLPwDs.

Conferring Leadership to Activists with Disabilities

Although relatively rare in the scope of parent activism, some parents are members of OLPwDs. Among the organizations discussed in this article, the National Organization of Parents of Blind Children (NOPBC) best illustrates this model. NOPBC is a sub-unit of the National Federation of the Blind. As such, parents are organized within and under a governing body controlled by people who are blind. The mission, funding, and policy decisions are all tied to the larger body. Parents are therefore positioned as allies to blind activists, rather than as competitors for authority, funding, and political power.

Using a different organizational model, the American Society for Deaf Children states that their board is "a group of dedicated parents and professionals" with no explicit reference to quotas of parents and/or deaf individuals in governance. That said, of the ten board members listed on their website with biographies (one board member had no biography), all (100%) were Deaf or hard of hearing, three identified as Deaf parents of Deaf children, and seven listed some affiliation with Gallaudet University. Thus, although positioned rhetorically as a group of parents and professionals, the board is a very specific set of parents and professionals who are themselves Deaf and wish to educate and shape the experiences of children who are Deaf.

Parents have also joined and/or offered support to self-advocacy organization, both because they as parents might have disabilities and/or to support the self-advocacy of their offspring. Blogger and parent of a nonspeaking autistic youth of color, Kerima Cevik regularly critiques parent-led autism organizations and aligns with autistic activists and organizations to promote grassroots community-building and pay-it-forward activist models (Cevik, n.d.). Many self-advocates with intellectual and developmental disabilities speak about the positive role their parents have played in supporting their self-advocacy, including providing transportation, assisting in preparing and delivering speeches, and co-presenting. Zona Roberts, mother of disability rights leader Ed Roberts, offers another useful example of a mother who fought for her son's inclusion, and then as he matured, supported his activism (Brown, 2000). In this model, parent advocacy may be largely behind the scenes, supporting their family members in taking the lead.

Parental Control with Inclusion of Self-advocates and Professionals

The most common strategy of OLPs is to build avenues of inclusion for family members, self-advocates, and professionals, while retaining considerable control themselves as parents. For example, NAMI's bylaws require that at least 75% of their board of directors be a person with or who had a mental illness, or parents or relatives of a person with mental illness. They established a Peer Leadership Council of people who have/have had mental illness, and the chair of that council automatically sits on the board. Using the biographies listed on the NAMI website, of the five member board leadership team, one person identified as a parent, two as family members, and one as a person with a mental illness diagnosis. Looking at the sixteen-person board (including officers), six identified as parents (38%), three as siblings (19%) (therefore, 56% identify as parents/family), and five as people with a mental illness diagnosis (31%). 4 Parents outweigh self-advocate control, but NAMI's board also has a sizable percentage of people with mental illness in leadership positions as well as a council to advance the interests of self-advocates. Among staff leadership positions (e.g., executive director, director of marketing) listed on the website, only one of thirteen (8%) staff members identified as a family member and no (0%) staff identified as people who have/had mental illness. NAMI's programming priorities reflect a value on self-advocacy, including supporting the Peer Leadership Council, stressing person-centered participation in treatment and research, and providing tools for advocacy and involvement. That said, NAMI does little to draw attention to or ally with the psychiatric survivors' movement or Mad activism which is critical of psychiatric intervention.

The Arc bylaws require that a majority of the board of directors be parents or family members of people with ID/DD or people with ID/DD. They also established a national self-advocates council and a siblings' council, among other councils, to serve in an advisory capacity. Of their board in Fall 2017, four of the five (80%) national officers were parents. Of the entire board (including officers), sixteen of 24 board members (67%) listed could be clearly identified as parents, family members, or self-advocates. This included nine parents, four family members, and three self-advocates. 5 Here we see a dominance of parents and family members (54%), as compared to people with disabilities (13%). The Arc listed 47 staff members, 42 of whom have bios listed on their webpage. Of these, three identified as parents, six as family members (21% parent/family), and one as a person with a disability although not clearly with an ID/DD diagnosis (2%). No self-advocates or people with ID/DD were identified among the staff (0%). Thus, in the day-to-day work of the organization, family members still have some representation, while self-advocates and people with ID/DD diagnoses have little to none. The national bylaws require local chapters to meaningfully involve parents, family members, and people with ID/DD in leading and guiding the chapter, but offer no specific percentage of the board nor other specific guidelines for meeting this requirement. Thus, local chapters have more leeway in their board composition and likely have less involvement by self-advocates.

Looking at their programming, Arc support of self-advocacy is substantial, including the self-advocacy council and an online forum for self-advocates. Many state and local chapters support self-advocacy efforts by providing funding, space and supports, and fostering recruitment. They also work closely with Self-Advocates Becoming Empowered—the national self-advocacy group for people with ID/DD—and state-level self-advocacy groups. On the other hand, The Arc boasts being "the nation's leading advocacy organization for all people with ID/DD and their families," clearly asserting their power and prestige above that of Self-Advocates Becoming Empowered.

Parental and Professional Control

Some OLPs focus almost exclusively on parent/family leadership. VOR, for example, has a sixteen-member board, of whom fifteen (94%) are parents and/or siblings. One member is a caregiver, and none are self-advocates. There are no bylaws mandating any particular representation, although historically the board has always focused on family membership. They have almost no history of alliance with self-advocacy organizations, and they present themselves as the voice of people with ID/DD (or at least those who lack the skills to speak for themselves).

Autism Speaks lists a board of 29 members, including twelve parents, two family members, and one self-advocate (an email with staff reported two self-advocates on the board), thus the board composition was 48% parent/family and 7% self-advocate (if we use the number reported in the email, 3% if we use website disclosure). Autism Speaks has no bylaw regarding representation of parents, family members or self-advocates, and participation by self-advocates is a recent change likely resulting from criticism by autistic activists and OLPwDs. Its website lists six staff leadership positions, and of these one (17%) is filled by a self-identified parent, and none (0%) by people who self-identify as autistic. Autism Speaks offers few resources for self-advocacy and no clear projects to foster or advance self-advocacy. As will be seen, Autism Speaks also rarely seeks to ally with autistic self-advocates or OLPwDs, and instead prefers to connect with medical, psychiatric, and behavioral health professionals and the pharmaceutical industry to support their agenda of medical research and treatment.

Although historically an OLP, UCP's current decision-making structure is dominated by professionals. UCP's website lists five officers and thirteen trustees. Of this eighteen-person board, five are parents or siblings (28%) and two are people with cerebral palsy (11%). In total then 39% of the board is composed of parents, family and/or people with disabilities. The rest are people who offer professional expertise. UCP has no bylaws regarding representation of their board, and thus no requirement for self-advocate representation. Unlike VOR and Autism Speaks, though, UCP has a strong record of supporting self-advocacy and working with OLPwDs. As such, it breaks the expected pattern that organizations with more emphasis on the social model and integration would also ensure leadership for people with disabilities.