Statement of the Problem

One of the towering achievements of the disability rights movement has been the establishment of the national network of federally-funded Centers for Independent Living (CILs), designed to provide an array of supports and services to individuals with disabilities. While there is considerable variation in the age, size, and programmatic focus of the hundreds of CILs across the nation, their establishing federal legislation mandates that each CIL provide four core services: information and referral; independent living skills training; peer counseling; and advocacy (US Department of Education, 2010). Individual CILs often seek additional funding in order to expand the range of what they provide, and some have developed extensive nursing home transition programs, or supports coordination, among other services.

Federal legislation also unambiguously mandates that CILs provide supports and services to people with any type of disability, including those with psychiatric disabilities — both those with only a psychiatric disability as well as those whose behavioral health conditions are in addition to a physical, sensory or intellectual disability (DeJong, 1979). However, the national record in meeting the needs of those with psychiatric disabilities in CILs has been mixed: by self-report, CILs served only 31,000 individuals with psychiatric disabilities in 2006 (National Council on Disability, 2006). At one end of the spectrum, some CILs, particularly those with modest budgets and limited staff resources, have focused primarily on those with physical, sensory or intellectual disabilities, and in these settings individuals with psychiatric disabilities may feel either unwelcome or poorly served (DeJong, 1979) (Holtz, Jones & Miller, 2001). At the other end of the spectrum, a handful of CILs have successfully pursued separate funding to develop specialized programs adapting the independent living philosophy to the needs of those with psychiatric disabilities (Deegan, 1992) (Salzer, 2002).

In the broad middle range are those Centers for Independent Living who respond to their consumers with psychiatric disabilities by integrating them into the ongoing supports already offered by the CIL — treating those with behavioral conditions as they would treat any of the other individuals with disabilities who cross their threshold. There is much to recommend this approach: people with psychiatric disabilities turn to their local CIL for the same supports and services as anyone else — for help finding housing, independent living skills training, a job or community resources, and for advocacy support. Further, people with psychiatric disabilities are often looking for the same type of service philosophy that characterizes CILs in general: they want the CIL to respond to them as individuals, to respect their decisions about their lives, and to allow each person the dignity of risk. Indeed, CILs that respond to people with psychiatric disabilities as they do to everyone else have served thousands effectively.

However, CILs face increasing challenges in this arena, challenges they may be unable to meet on their own and within their current — and often limited - resources. On the one hand, there is a growing recognition within CILs that substantial numbers of CIL consumers with physical, intellectual or sensory disabilities also grapple with mental and emotional problems, sometimes related to their primary disability and sometimes entirely independently: even responding effectively to the mental health needs of these consumers may begin to exhaust CIL resources. On the other hand, there is an increase in the number of persons who only have a psychiatric disability and who are finding their way to their local CIL for support (J. Rogers, personal communication, October 15, 2010), a trend most in the field anticipate will grow but for which there is currently little planning.

CIL personnel, often with little or no knowledge of mental illnesses and minimal experience with those experiencing the often troubling symptoms of their emotional problems, sometimes struggle to respond on their own to consumers with serious psychiatric disabilities. First, CIL staff are unable (and are not trained) to offer clinical care, prescribe medications, or deliver specialized services and supports; second, they often are at a loss in responding to the few consumers whose disruptive, demanding, or disorganized behaviors appear to require a stronger intervention than they are skilled in providing; and, third CIL staff are particularly at sea in meeting the needs of the very few consumers in CILs who experience a psychiatric crisis and are in need of immediate assistance. In an ideal environment, the CIL response to these needs would include providing consumers with access to a network of collaborating CIL and MH service systems, where staff work together on the basis of shared values to respond to each consumers' expressed needs. But, our research has found, this is only rarely the case, in part because of a substantial level of distrust and misunderstanding that limits service coordination.

The Experiential Base

The Temple University Collaborative on Community Inclusion of Individuals with Psychiatric Disabilities (The Collaborative), Liberty Resources (LR), and the National Mental Health Consumer Self Help Clearinghouse (The Clearinghouse) have worked together for several years to improve the ability of Liberty Resources to meet the needs of individuals with psychiatric disabilities. This article is based on our joint reflection on those experiences and their implications for improved IL/MH communication and cooperation.

The Collaborative is a national-scope Rehabilitation Research and Training Center, funded by the National Institute on Disability and Rehabilitation Research (NIDRR) to undertake a series of research initiatives and knowledge translation activities that can strengthen the field's understanding of the policies, programs, and practices that help individual with psychiatric disabilities connect or re-connect with families, friends, community activities, school, and work — that is, to 'live just like everyone else.' The Collaborative has had several projects focusing on the connections between mental health systems and Centers for Independent Living, and in each project the Collaborative has drawn heavily on its strong ties to Liberty Resources.

Liberty Resources was established, in Philadelphia, as a Center for Independent Living in 1980, one of the nation's first CILs, to provide a focus for services and supports for individuals with disabilities. Today, Liberty Resources has nearly 200 staff and serves approximately 7,000 individuals each year. At least 51% of both the Board of Directors and the staff of Liberty Resources are themselves individuals with disabilities, and services are today offered in both Philadelphia and Allentown (PA).

The Clearinghouse, funded by the SAMHSA Center for Mental Health Services, is a national center of information and support focusing upon consumer empowerment, the growth of peer specialist roles within mental health provider agencies, and the development of peer-run supports and services for people with mental health conditions.

For the past four years, Liberty Resources and the Clearinghouse have worked with the Collaborative on a number of projects to help it better respond to the needs of a growing population of people with psychiatric disabilities. Our work together has included:

Staff Training. Liberty Resources asked the Collaborative to provide staff training on a range of mental health issues, in order to help them better respond to increasing concerns about LR consumers with psychiatric disabilities. We designed our training with a dual focus. Half of the training reviewed the 'fundamentals' of mental illnesses (that is, our current understanding of the causes, symptoms, treatments, and 'best practice' rehabilitation programs in use in the field), in a belief that CIL staff interactions with mental health consumers would be strengthened by a basic understanding of this disability and the sources of support available from local mental health systems. The second half of the training provided exposure to the growing national commitment to mental health consumer empowerment, the concepts of recovery, the increasing reliance within the public mental health system on consumer-run alternatives, and the emerging principles of community integration — all approaches which we recognized as more congruent with the philosophical underpinnings of the independent living movement.

The training was generally well-received and our participant evaluations indicated that the training approach that worked best was our use of consumers of psychiatric services talking about their experiences. But the training also surfaced some persistent tension around the aspects of the program that reviewed what were seen as clinical issues: a few trainees raised questions — both within the training program itself and in post-training evaluations — about whether it was useful for them to learn about symptoms, diagnostic categories, psychotropic medications, the services available within mental health systems, or the option of involuntary psychiatric hospitalization. Liberty Resources' trainees, already well-schooled in the prevailing ideology of the independent living movement, struggled with what they saw as an understanding and approach to psychiatric disability that they interpreted as too clinical and, thus, antithetical to the principles of independent living.

Situational Assessments. Following the all-staff training, a group of Liberty Resources counselors and supervisors met with Collaborative staff — both mental health consumers and non-consumers - on a semi-monthly basis to review staff concerns about their responses to specific individuals with psychiatric disabilities: staff presented issues from their day-to-day practice, and the group together explored options for better meeting consumer needs. These too were very productive sessions, but there was also considerable discussion around many of the same themes. Two of the situational assessment discussions were particularly instructive, in that they raised issues about the nature of CIL interactions with local mental health services:

• in one, a consumer with a mental illness repeatedly claimed to be harassed by older teens in his neighborhood, which the CIL staff, after considerable investigation, had finally concluded was not really happening. When it was suggested that the consumer in question might be encouraged to talk with his psychiatrist to assess the nature of the problem — and whether this was a delusion, an anxiety related issue, or simply a misinterpretation of nonthreatening social interactions, any of which might be partially ameliorated with counseling and/or medication - the participating CIL staff expressed strong reservations. Even suggesting the possibility of a formal psychiatric evaluation, traditional mental health treatment, and the possible use of medications was considered by most as 'a very medical model approach' outside the framework of CIL services, despite the objections of one staff that easing the consumer's discomfort through these means might at least be considered;
• in another, a mental health consumer with both physical and psychiatric disabilities had violated the terms of his rental agreement in an LR housing program and had been given an eviction notice to vacate his apartment. Although Liberty Resources had give the consumer a lot of time and assistance to find alternative housing, on the day of eviction he had barricaded himself in the apartment and refused to move. With the Collaborative's help, the City's mental health emergency team was called in, but felt that because the consumer was not an immediate danger to himself or to others there was little they could do. In our discussions, staff were upset at the unresponsiveness of the mental health system to this crisis, but also concerned that they felt they had been forced by the situation to take actions that might have resulted in an involuntary hospitalization, which did indeed take place several months later but was clearly an unwelcome outcome within the staff's understanding of Liberty Resources'philosophical framework.

A Fact Sheet on Psychiatric Disability. One of the Collaborative's projects has been the development of a "Fact Sheet" for CILs that focused on "Serving Individuals with Psychiatric Disabilities in Centers for Independent Living," with input from both Liberty Resources and Independent Living Resource Utilization (ILRU). The Collaborative facilitated teleconferences with a national group of CIL leaders to seek their editorial review of the Fact Sheet's proposed content, and implemented a national survey of CIL directors from the ILRU listserv, to which 34 CIL directors responded with advice on the Fact Sheet's content and approach. On the one hand, survey respondents and advisory committee members were strongly supportive of the need to improve staff understanding and acceptance of people with psychiatric disabilities; on the other hand, they advised against any allusion in the Fact Sheet to diagnostic categories, clinical treatment, or any other content that reflected a medical model orientation. People with psychiatric disabilities were to be integrated in the CIL 'just like everybody else,' they argued, and CIL staff did not need to be particularly sensitized to the way in which psychiatric disability created both unique opportunities and challenges to community living. In addition, the first version of the Fact Sheet, which The Collaborative worked with The Clearinghouse to revise (Temple University Collaborative on Community Inclusion of Individuals with Psychiatric Disabilities, 2011), was strongly criticized by both mental health consumers and independent living staff for placing too little emphasis on the mental health consumer movement, consumer-run alternative programs, and consumer-based criticisms of traditional mental health care.

A Research Initiative to Assess the Effectiveness of Peer Support in a CIL. Finally, the Collaborative, The Clearinghouse, and Liberty Resources initiated a randomized controlled trial of the effectiveness of having mental health peer specialists on the staff of Liberty Resources. Peer specialists, that is, specially trained individuals with a psychiatric disability were employed by Liberty Resources to work with their consumers with a psychiatric disability, to insure that the full array of CIL assistance was available to them. In framing the specifics of the intervention to be studied, however, conversations bogged down with regard to whether or not the mental health peer specialists were to have an ongoing responsibility to help the increasing number of Liberty Resources' consumers with psychiatric disabilities to connect with local mental health services and supports. That is, it was initially unclear whether or not the 'information and referral' aspects of the CIL were to be extended, for those consumers who might benefit from and be interested in them, to traditional mental health services, rehabilitation programming or peer-run alternatives.

In the Fall of 2010, staff from Liberty Resources, The Clearinghouse, and The Collaborative sat down together to review the issues that had emerged over the past 18 months, looking at: a) the written evaluations from the staff training; b) the notes from the situation assessments; c) the survey responses from our national sample of CIL directors to early drafts of the Fact Sheet and criticisms from consumers of our initial publication; and d) the job description developed for the peer specialist intervention. What emerged was the recognition that many in the independent living movement had substantial reservations with regard to their relationship to mental health systems and providers. We reviewed the data from our interactions, and have tried here to define both the key issues that have emerged and a sense of how both systems could do more to insure effective, philosophically congruent, and sensitive care. These are offered here in hopes of sparking a further national discussion of the issues.

The Issues

Relationships between these two systems of care swirl around three inter-related questions, each of which requires, we think, more collaborative thinking. At the broadest level, the core issue may be the degree to which Centers for Independent Living feel they can benefit from collaborative relationships with mental health programs (in either public or private settings, or from traditional and/or peer-run alternatives) in meeting their obligations to people with psychiatric disabilities to provide information and referral services, independent living skills training, peer counseling, and advocacy. Can CILs do this on their own?

We should note that in attempting to address this question we grapple with incredibly complex issues. Even determining the best way to identify those The Collaborative, The Clearinghouse, and Liberty Resources refer to as 'individuals with psychiatric disabilities' raises a storm of controversy and debate, with alternative suggestions as varied as 'individuals with mental and emotional disabilities,' 'consumers' receiving treatment for mental illnesses,' 'those with the lived experience of mental illnesses,' and 'people defined by mental health systems as mentally ill' — all reflecting different philosophical perspectives on mental illnesses and mental health treatment. With no unanimity on terminology, we use 'people with psychiatric disabilities' here, while recognizing the variety of impassioned objections and reasoned alternatives each term evokes.

How much should CIL staff know about mental illnesses?

At the heart of the traditional mental system is an ongoing effort to understand the origins and symptoms of psychiatric disabilities and the appropriate treatments and rehabilitation services that should be offered in response. The system uses the psychiatric diagnostic process to provide some order to this understanding — although our understanding of mental illnesses is continually evolving (not, one might note, all that differently from our understanding of back pain or breast cancer or muscular dystrophy). On the one hand, the field increasingly recognizes that the origins of psychiatric disability may vary from individual to individual, that the severity of symptoms vary from person to person and vary for each person over time, and that there is great debate about the effectiveness of various treatments, the benefits and dangers of psychiatric medications, and the impacts of a wide range of rehabilitation services. Most people with psychiatric disabilities have had a variety of diagnoses, treatments, and rehabilitative engagements, without the development of real unanimity on these issues. On the other hand, there seems little point in denying that the symptoms of psychiatric disabilities occur (people can become paralyzed by depression, do experience disordered thinking or severe anxiety, or may have hallucinations), and many people with psychiatric disabilities say they have benefitted from their therapy, from medication, and/or psychiatric rehabilitation programs. But does it help CIL staff to know all this?

The argument for providing CIL staff with some overview of origins, symptoms, and services rests partially on the assumption that knowing a bit about how mental illnesses express themselves can be helpful to the CIL staffer working with individuals with these experiences, a population many CILs have not considered a part of their constituency in the past (Penney & Bassman, n.d.). At the very least, some knowledge can defuse the prejudices that some CIL staff may exhibit: in our research, we heard from more than one individual with psychiatric disabilities who felt he or she couldn't get in the door of the CIL because of those prejudices, and from several CIL staff who felt devalued by their CIL colleagues once they revealed their own psychiatric histories. More importantly, CILs may find that a deeper understanding of psychiatric disability yields new approaches in their work, at either the individual or programmatic level. The counter-argument for not providing CIL staff with specialized knowledge of psychiatric disabilities is that each person deserves to be treated as an individual without a label, and that it is the label that often shapes services (or the refusal to offer services) in ways that run counter to the fundamentals of independent living: people are not their diagnosis, diagnoses do not often accurately predict treatment outcome, and the best prognosis is not much more than a sometimes limiting and damaging guess. The truth, of course, may lie between these two polar points of argument, but we have too little dialogue in these fields to move us toward a consensus.

One other argument for providing CIL staff with fundamental information, however, may be that knowing the basics of mental illnesses can be enormously helpful in assuring that individuals with psychiatric disabilities within the CIL receive the treatment, rehabilitation, and other supports they may feel they need from formal mental health systems. But helping people with psychiatric disabilities to access traditional mental health care will be seen by CIL workers as helpful to the consumer only if there is a sense that mental health systems have something to offer that CILs themselves cannot provide. In the quest to assist consumers with taking charge of their own lives, CIL staff with some knowledge can provide information about available mental health providers and assist interested consumers in accessing them.

Should CILs refer clients to mental health systems for services and supports?

There are really two issues bound up in this one question. On the one hand, there is a feeling within many CILs that consumers would be better off avoiding the 'medical model' nature of formal mental health systems, and that CILs, if they respond to the individual with psychiatric disabilities in the same way in which they respond to everyone else, can provide more appropriate, more respectful, and more helpful services without leaning on formal mental health systems, with all the dangers that these systems represent to the consumer's self-regard or independence. CILs are concerned about the impacts of labeling, or over-medication, or 'chronic' diagnoses — all of the well-documented failures of mental health systems in the past. Many of those in the independent living movement are skeptical abut both clinical mental health care and about mental health rehabilitation services — psychiatric rehabilitation programs, vocational rehabilitation initiatives, social rehabilitation models, and so on.

As noted earlier, some CILs respond to the discomfort they experience when serving people with psychiatric disabilities by directly or subtly limiting their access to CIL services, while others have found new funding for programs established within their own to specifically serve those with psychiatric disabilities. However, many CILs simply integrate people with psychiatric disabilities into their ongoing operations without referral to or reliance upon their own specialists in the mental health field or the supports of local mental health providers. The field has very little reliable data on the effectiveness of this CIL approach, and certainly those with psychiatric disabilities do have the choice of whether or not they want a referral to formal mental health care.

However, there is some question whether CIL staff have the capacity to provide adequate services on their own: they cannot, for instance, provide psychotherapy or write prescriptions for psychotropic medications, and they may not have the time or the experience to provide the rehabilitation supports those with serious psychiatric disabilities may require — and might receive from local mental health providers. Many of these issues come to a head in the very infrequent instance when there is a psychiatric crisis, when the gap between CILs and mental health providers is most evident. In the rare instance when a genuine crisis does emerge, CILs face a significant dilemma, for if they choose to seek the support of the mental health system in managing the crisis they run the risk that the individual in question may be involuntarily hospitalized, inappropriately medicated, and/or left with few real choices.

Having fought long and hard within the physical disability field to facilitate control of services for consumers to the consumers themselves and to force a recognition of their individuality, CILs believe the mental health system is behind the curve on these issues, both in their day-to-day operations and in crisis situations. Their past attempts to both seek and coordinate care with representatives of mental health systems have left a lasting impression, among many, of a system that treats consumers poorly and de-values the contribution to their welfare that could be made by Centers of Independent Living. With the CIL community so deeply committed to a substantially different approach, many CILs appeared to choose to work with people with psychiatric disabilities on their own, turning to mental health systems in the rare instance when a psychiatric crisis appeared to leave them no choice. At the same time, both CILs and mental health consumer groups argue that mental health systems have consistently overlooked an array of alternatives to traditional mental health care that offer wider and more effective supports more congruent with the independent living philosophy, and that CILs should rely more on the emerging resources of the mental health consumer movement (Temple University Collaborative on Community Inclusion of Individuals with Psychiatric Disabilities, 2011).

How can mental health alternatives be highlighted and accessed by CILs?

This part of the conversation about the IL/MH divide might begin with an acknowledgement of the degree to which traditional approaches to mental health care do continue to dominate the delivery of mental health services. CIL staff are more likely to find clinical approaches in both treatment and rehabilitation settings than they will find in more consumer-oriented and consumer-empowering programming. One might argue that the CIL's advocacy services should include going into battle with mental health systems that are unresponsive to the consumer's real needs and preferences: while this may be a feasible challenge for the CIL worker on behalf of an individual consumer, it poses an immense systems challenge with a much larger and more entrenched mental health establishment. But CILs are also often unaware of the degree to which mental health systems — at state and county and municipal levels, in community mental health centers and psychiatric rehabilitation programs — have been making sustained efforts to transform their systems and services into more consumer-centered and recovery-oriented support networks. Indeed, most systems and services now define themselves — with variable accuracy — in just this way (The President's New Freedom Commission on Mental Health, 2003) and pressures from mental health advocacy groups will continue to push in these directions.

Indeed, the still-halting transformation of mental health systems is driven by an increasingly powerful mental health consumer movement. CILs could make common cause with the mental health consumer movement, in part because mental health consumers have drawn both inspiration and their core values from the independent living movement, in part because mental health consumers share many of the same experiences — of disempowerment and disenfranchisement and discouragement — that fuel the CIL. Mental health systems have responded to the mental health consumer movement in several ways: by increasing consumer representation and empowerment at policy making levels, by insisting on more consumer control at the individual service planning level, by funding consumer-run services in many states throughout the nation, and by defining new roles and new funding avenues for 'peer specialists' as an integral part of the mental health workforce. CILs can join forces with their local or statewide mental health consumer groups — a potentially powerful alliance — to broaden these initiatives, and in the process broaden the treatment and rehabilitation resources available to their consumers with psychiatric disabilities.

Some mental health consumer groups have still more challenging perspectives: some point to the mounting evidence of the deleterious health impacts of psychiatric medications, to the history of abuse within psychiatric hospitals, to the ineffective application of both treatment and rehabilitation programs deemed 'best practices,' and to 'old wine in new bottles' nature of many state and local mental health system transformations (The National Coalition for Mental Health Recovery, 2011). Consumer groups have developed alternatives to involuntary hospitalization, and argue for broader use of 'psychiatric advanced directives' that allow individuals to specify, while they are well and able to make good judgments, the type of care they would like to receive when they are not (National Resource Center on Psychiatric Advanced Directives, 2010). It should be noted that consumer mental health programs are scattered, and that the most innovative programs — like consumer-run alternatives to inpatient care — are not widely available. Still, the potential for a meaningful alliance is there.

Recommendations

To some extent, final answers to these questions continue to elude us: CILs remain unclear about how much information about mental health, mental health treatment, and mental health alternatives their staff should know. Liberty Resources, The Clearinghouse, and the Temple University Collaborative have developed a series of recommendations — based on the experiences described in this article — to help the field move toward a consistent approach, linking the IL and MH worlds on behalf of the tens of thousands of individuals with psychiatric disabilities — with and without other physical, intellectual, or sensory disabilities — who will be turning in the years ahead to Centers of Independent Living for help.

First and foremost, CILs can and should continue to do what they do best: offer a consistent menu of IL support services to all consumers who come in their doors, focusing on goal driven conversations with each consumer, and making sure that the consumer controls when and how supports are delivered. CILs should not be afraid to have discussions in advance with consumers about contingency planning for any type of health/disability crisis or exacerbation that may emerge, and the mantra "nothing about you without you" applies always. This doesn't mean, however, that CILs won't face tough decisions when an emergency requires a 911 call.

Building System Connections. Given the growing presence of individuals with psychiatric disabilities within the consumer base served by Centers for Independent Living, it is imperative that both CILs and area mental health authorities establish ongoing and effective relationships — designated contact persons at both ends, established referral, service coordination, and crisis management plans — that can improve the overall quality of care offered to this population. Consumers who would prefer the best of both systems of care should not be forced to choose between the two, nor caught between opposing philosophies of care.

Advocacy. Where CILs find mental health systems and service providers still clinging to more traditional approaches, they have an obligation to advocate with those systems for more sensitive, more empowering, and more effective care. Where mental health systems have joined the movement toward consumer empowerment and recovery-oriented care, CILs can play a central role in assuring that the systems and services remain committed to acting on their best intentions, building an integrated network that respond to individual consumers.

Joint Training. CIL workers need to know more about individuals with psychiatric disabilities if they are both to adequately meet their needs within the CIL setting and to make timely and appropriate referrals to mental health providers — in both traditional and consumer-run programs — for help the consumers request that CILs cannot provide themselves. On the other hand, mental health workers need to establish a familiarity with the fields of physical, sensory, and intellectual disabilities, know more about the array of services offered by CILs, and be able to engage in joint services planning around common clients. The training offered to both system staff must grapple forthrightly with real or perceived philosophical differences.

Linking To Consumer Groups. There is too little contact between the independent living movement and the mental health consumer movement, including the alternative consumer-run programs and peer specialist services they have created. CILs can do more to search out local mental health consumers and consumer advocacy organizations to establish closer links and find the basis for a more congruent philosophy of care (a directory of such groups can be found at http://www.cdsdirectory.org/). This may involve confronting issues of prejudice — on both sides — but seems to promise consumers the opportunities for a stronger and more effective advocacy voice.

These recommendations could hardly be considered radical proposals, nor are they either complex or expensive to implement. It requires these systems to reach out to each other, to start a dialogue and establish a formal enduring connection, and grapple with both the practical and philosophical gaps currently between them. There is no 'national initiative' or 'regional training consortium' required. All we need is the establishment of an ongoing relationship at the local level, some cross-disability cross-system training at both provider and consumer levels, and a willingness to look clearly at the philosophical gaps that remain.