Chapter 4 --Treatment Planning and the Community: Linkages and Case Management
Because persons with disabilities often have multiple life problems, they may require services ranging from vocational training to medical care to assisted living. It is not unusual for services to be duplicated or ineffective when a case manager is not utilized, and so a substance use disorder treatment provider may have to either case manage these services or find another organization that can do so. A case manager can be a strong advocate for a person with a disability and help her locate appropriate and accessible services.
Treatment Improvement Protocol (TIP) 27, Comprehensive Case Management for Substance Abuse Treatment (CSAT, 1998), suggests three different models for establishing linkages to provide for interagency case management. These include
In the single agency model, relationships with other agencies are established as needed to meet the needs of particular clients, with a single case manager retaining full control over the case. Often, this model is used to meet acute needs in a system where no partnerships have been established. While this model has the advantage of providing a single point of contact for the client, it may limit the array of services available and may require considerable time on the part of the treatment provider to establish a connection and reach a suitable arrangement.
In an informal partnership, staff members from several agencies collaborate as a temporary team to provide multiple services for clients, advising and consulting one another and exchanging information. No contractual mechanism is used in informal partnerships, which are readily constructed on a case-by-case basis. Such partnerships make more services available for the client and improve service coordination. However, breakdowns in service coordination are possible, and different problem orientations may lead to conflict among members.
A formal consortium links three or more providers through a formal, written contract. Agencies work together on an ongoing basis and are accountable to the consortium, usually with one agency taking the lead to ensure coordination. Case managers may be supported through resources pooled from members of the consortium or by the lead agency. Among the advantages of this approach are more opportunities for coordinating care, less duplication of services, and strengthened service integration. Disadvantages are that multiple agency participation may raise costs and consortia take more time to organize and to respond to problems.
Providers must determine the type of organizational structure that will best meet the linkage goals they have identified. Considerations include the number of people with disabilities served, the regularity with which clients with coexisting conditions are served, the types of disabilities represented, the service providers most frequently accessed, financial considerations, and geographical and political factors within the community.
Providers must be prepared to act as advocates for their clients when services and supports that are normally readily available and effective prove inaccessible for the client. There may be physical barriers to access in other facilities, such as stairs and no ramp, inaccessible parking, or an elevator that is frequently nonfunctional. Other barriers may arise from policies or procedures that should be modified to take the client's disability into account; for example, the reliance on prescription medication may initially bar the client from 12-Step programs or halfway houses that require participants to be "drug free." Materials supplied by linkage agencies may be in inaccessible formats; for example, an agency might ask a client to pay for a set of resource materials in Braille or closed captioning on videotaped materials for people who are deaf or hard of hearing. To act as the client's advocate in such circumstances may require linkages with agencies that are familiar with the requirements of the Americans With Disabilities Act (ADA), other Federal legislation, and applicable State and local disability laws and regulations. With a stronger understanding of the ADA, agencies and their field workers can become much more confident and effective advocates for their clients. In addition, agencies should establish working relationships with legal services, law school legal clinics, civil rights pro bono offices, and attorneys in order to provide clients with needed legal assistance. There are many types of creative pro bono legal services available on a local, State, and national level for both the agency as an organization and the client as an individual.
While establishing additional linkages may seem an almost insurmountable barrier to overtaxed treatment agencies, they are essential to increase the effectiveness of substance use disorder treatment and recovery services for people with disabilities. A recent 3-year study of people with disabilities treated by the Anixter Center in Chicago demonstrated that even individuals with severe and multiple disabilities are successful in treatment and maintain sobriety if provided with modified treatment and case management services (Research Development Associates, 1997). Because many disabilities go undetected, successful outcomes for the treatment center may increase as providers build these linkages and use them to enhance their expertise and experience in identifying and accommodating disabilities. Furthermore, the techniques that enable providers to better accommodate people with disabilities can be readily applied to help them meet the varying needs of all clients with greater effectiveness and insight.
Building Linkages for Treatment Programs
Why Linkages Are Necessary
The following are among the most frequently cited goals that motivate providers to establish linkages. The specific goals that resonate most with the provider will drive the linkage model chosen, the specific partners who participate, the activities engaged in by the collaborative team, and the means of formalizing and maintaining the relationship.
To improve an individual's prognosis for recovery. As stated in Chapter 1, research suggests that, for persons with disabilities in particular, issues such as lack of employment and social isolation contribute strongly to substance use. Linkages can address some of these problems, even when a client is unable to work on them in treatment. For example, most individuals who are deaf would benefit from a strong aftercare plan that connects them with an aftercare counselor in their community. Three factors that contribute to long-term sobriety following treatment for individuals who are deaf and hard of hearing are (1) employment, (2) having a friend or family member that they can talk to about sobriety, and (3) the availability of self-help groups such as Alcoholics Anonymous (AA) and Narcotic Anonymous (NA) (Guthmann, 1996). Linkages can help ensure that these additional services are available.
To ensure compliance with legal mandates. Legal mandates such as the ADA require treatment programs to be accessible for people with disabilities. Programs that are not accessible face the possibility of a class action suit from people with disabilities. Disability advocacy groups or consultants often have expertise to share on how to meet legal requirements. For example, one organization may review the policies and procedures, physical facilities, and communication strategies of another, identifying areas that may be in violation and suggesting means of coming into compliance.
To increase teamwork among providers in addressing advocacy issues. People with disabilities who have substance use disorders are subject to double discrimination and may face seemingly insurmountable barriers to treatment. Many are not able to speak effectively to their own needs. In such cases, the treatment provider can help identify appropriate resources and enhance the client's capacity for self-advocacy. Both at the client and community level, it is critical that members of the substance use disorder and disability treatment communities support one another in promoting advocacy for their clients.
To improve coordination of services. A person with a coexisting disability may be eligible for services from several agencies, which might provide similar, duplicate, or conflicting services concurrently. Services provided in a fragmentary way typically prove far less effective than those coordinated thoughtfully. By establishing a working relationship with disability resources--both on a case-specific basis and through ongoing coordination mechanisms such as task forces--the treatment provider can better serve the client. Interagency collaborations also tend to formalize case management services and ensure that these services continue in spite of staff turnover.
To access or leverage scarce financial resources effectively. Some people with disabilities are eligible for a range of services and funding from a variety of agencies, such as State vocational rehabilitation (VR) services, Centers for Independent Living (CILs), community mental health services, Department of Veterans' Affairs, Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), workers' compensation, physical rehabilitation, public transportation, public assistance, and managed care capitation programs for members of designated "risk pools." In order to ensure that people benefit from these services, treatment providers need to have linkages that will enable them to identify what may be available for their clients and how to access available services and funding.
An increased familiarity with disability-related resources in the community will also greatly help eliminate unnecessary expenditures for inappropriate accommodations or out-of-state services. For example, New York (a State that has obtained a Medicaid waiver) had to address the needs of persons with traumatic brain injuries (TBI), a small group that required extensive nursing home care. After providers refused to serve these high-cost clients, the State referred them to out-of-state providers at $750 to $1,000 per day, for a total cost of $100 million yearly. A significant percentage of these persons also had substance use disorders. A provider aware of the problem, as well as alternative treatment options, pointed out how the cost of treatment could be reduced. The State obtained a home/community-based medical services waiver to allow individuals to receive services within the community. Substance use disorder services were reimbursed more generously than ordinarily allowed under Medicaid, and the total costs of providing care were greatly reduced. (See Chapter 5 for more information on funding treatment for people with disabilities.)
To identify appropriate accommodations and procedural modifications. Disability resource agencies can often help providers better understand the nature of people's impairments and identify strategies available to increase their functionality. To varying extents, people may effectively provide information on their own disabilities and the accommodations that have worked for them in the past. Some, however, may be newly disabled; may have had little opportunity to make informed decisions; or may be poorly motivated, due to low self-esteem or discouragement, to seek accommodations. Community linkages can help the provider determine whether or not a disability accommodation is needed. An example is a patient with a spinal cord injury who entered a treatment program that only allowed 10-minute breaks. The patient's bladder program sometimes took 30 minutes. When she explained the problem, it was viewed as treatment resistance and she had to leave the program (a clear violation of the ADA). Had treatment staff consulted a disability organization familiar with spinal cord injury, it would have recognized her legitimate need for accommodation.
Disability resource groups can help identify communication strategies or equipment that may be practical in a particular instance. They can also help treatment providers develop equitable policies and procedures, and materials in accessible formats for people with disabilities participating in treatment. Other benefits can accrue from such linkages (see Figure 4-1 for examples). Consultation should always occur early in the treatment to avoid the unfairness of last-minute adjustments. For example, a visually impaired person who needs materials in large print format should not fall behind while waiting for a resource or assignment others received the previous day.
Identifying Needed Linkages
It is helpful for people with disabilities if treatment programs take the time to analyze their current client base and determine the types of linkages and models that are most needed. Through formal surveys or informal meetings useful information can be gained, such as
This information can be used to determine the areas in which disability-specific expertise or resources are required to more fully address people's needs.
Of course, if an initial assessment reveals the agency is not treating significant numbers of people with disabilities, the program should try to determine whether people are deterred by barriers that may not be apparent to the agency. The treatment agency should determine
Locating Collaborative Partners
Most communities can help locate agencies to assist providers who want to treat people with disabilities effectively, and every State has a State Independent Living Council that can also provide information. Public health departments, the United Way, and county governments frequently produce directories of social, welfare, health, housing, vocational, and other services offered in the community. Sometimes they produce an automated directory. An excellent way to locate disability-related advocacy groups is to contact the State agency for vocational rehabilitation. Each office is mandated to have an ongoing consumer connection and should be able to assist in locating locally active service or advocacy agencies. Some of the agencies that may provide assistance to substance use disorder treatment programs seeking to work with persons with disabilities are listed in Figure 4-2.
Sources of Technical Assistance
Treatment providers need not be experts in all aspects of disability. There are a number of agencies available to provide specific information and assistance in these areas. The following key agencies are resources for general technical assistance on disability issues and can frequently provide referrals to linkage partners. Complete contact information for many of them is provided in Appendix B.
Building, Formalizing, and Maintaining Linkages
Once an agency identifies its needs and locates a potential partner, it can begin to lay the foundation for what may become a lasting relationship. Areas for collaboration can be identified and tested on an informal basis prior to confirming the linkage in binding agreements. For example, a relationship might be developed in stages such as the following:
One organization that has effectively established strong community links is the Pima Prevention Partnership; it is described in Figure 4-3.
Formalized linkage agreements
Once relationships have shown themselves to be beneficial, they can be formalized through a written service agreement that outlines the duties and responsibilities of both parties. This type of document can articulate why and how the programs should work together, highlighting the benefits each party should expect to derive from the relationship. Listed below are some examples of areas that might be addressed in such an agreement.
Substance use disorder treatment programs can provide
The disability resource agency can provide
All agencies can
Of course, a formal agreement is no guarantee of a flourishing and productive relationship. Attention can be given to maintaining the established relationship through shared activities, such as the exchange of speakers, pursuit of joint funding opportunities, cross-training, and periodic meetings.
Linkages in Case Finding And Pretreatment
Case finding generates the flow of clients into treatment, often through formal liaisons with referral sources. Most individuals are referred to substance use disorder treatment by other agencies. A treatment program may use formal agreements with referral sources to create close partnerships and ensure that effective referrals are made so that clients do not fall through the cracks. For example, a treatment program might develop a contract with a hospital to do onsite evaluation of potential clients, whether they are visitors to the emergency room with mild head injuries or individuals who are newly disabled being discharged after acute care. Although many communities have informal referral networks created by individuals who know each other, partnerships are most effective if sought and maintained at the organizational level. (Several common referral sources and their functions are described in Figure 4-4.)
To make appropriate referrals, referring agencies should have a basic knowledge about the approach and procedures used by the treatment program, including admission criteria. In particular, for people with disabilities, they should know that the program is accessible and prepared to treat people with the disability in question. In order to ensure that different agencies have the requisite knowledge, it may be necessary to establish a formal training linkage that would involve staff cross-training.
A referral is effective only if the potential client contacts the treatment program. Ensuring that the contact occurs may be a task of the referring agency, the treatment program, or the client, depending in large part on the client's functional level and support network. In planning all treatment activities for clients with disabilities, it is critical to accurately assess their ability to be proactive and undertake activities on their own behalf. Some individuals with disabilities may become unnecessarily dependent on others. Others may insist on undertaking all activities, even ones that may prove to be beyond their capacity. For some clients, the referring agency need provide only a contact person's name and telephone number and then carry out a routine telephone followup. For others, a staff member from the referring agency may have to accompany the client to the treatment program and remain with the client through the initial phase of treatment. However the first contact is undertaken, the manner in which it is achieved should be regarded as a critical first step toward treatment, and it should not be left to chance.
In developing partnerships with referring agencies, the treatment program should ensure, through interagency agreements, that mechanisms are in place for exchanging client information. The referral process is two-way, however, and the treatment program can also help clients with disabilities by connecting them with other services commonly available through programs for people with disabilities. To do this, programs need to maintain a resource directory of places to make referrals.
Linkages in Primary Treatment
Primary treatment is the period when a client is most actively engaged with the provider in treatment. During this period, many people with disabilities face challenges that may be addressed more effectively through well-chosen linkages. Whether the linkage is accessed through one-time arrangements or is incorporated into a collaborative treatment plan will depend on the treatment agency's policies and the extent of the client's needs.
Many people with disabilities will also have specific needs (such as the use of adaptive equipment) with which the treatment provider may not be familiar. Informed resources, such as disability advocacy groups, can help educate providers about these needs.
When treating clients with disabilities, counselors should be prepared to encounter additional complexities in some routine case management tasks as well as some new tasks and concerns. Because failure to recognize and address disability-related issues can seriously undermine treatment, the Panel recommends that early referrals to linkage agencies be made and that those services be provided concurrent with, rather than following, treatment. For example, because employment is likely to be a particularly challenging issue, realistic employment goals should be established early in the treatment process with the assistance of a vocational rehabilitation agency.
Numerous factors determine the type and level of adjustments required. Among the most obvious are the nature and severity of the disability, the length of time the individual has had the disability, the resources the individual has accessed to help him with the disability, the personal characteristics and skills of the client, his living situation, and his support systems. Linkages to other services may help to address and alleviate many of these problems. The following sections (and Figure 4-5) present some of the most common problems and the ways in which linkages can be used to help solve them.
As the client's advocate, the treatment provider may need to address discrimination specific to the individual's physical or mental disability, in addition to the discrimination that may occur due to a substance use disorder. The treatment provider should be able to determine if a discriminatory barrier has prevented a client from accessing a requisite service. When discrimination is encountered, the individual may need assistance from disability resource groups to develop and exercise self-advocacy skills. In some cases, intervention by the provider may also be required to ensure accessibility. Linkages in this area are extremely important because the treatment provider is unlikely to know how to advise or assist a client if the client experiences discrimination from another agency.
Disabilities Contribute to Substance Use Disorders
Disability-related issues can contribute to a substance use disorders and often must be addressed as part of the treatment process. For example, in the case of a recently acquired disability or one that is not readily apparent to the client, a client may need peer counseling or psychological counseling in the midst of treatment to help him deal with unresolved disability issues. The disability may have had a profound effect on the quality of peer relationships, job access, sexual function, and other areas--all of which may be relevant to recovery. The isolation, poverty, excess leisure, and low self-esteem that may accompany a severe disability may also have been factors in the development of the abuse pattern.
A key area of concern for many people with disabilities is employment. It has been estimated that 60 to 70 percent of people with disabilities are either underemployed or unemployed (Taylor et al., 1986; LaPlante et al., 1997). Lack of employment may be a factor in substance use; conversely, addressing and overcoming barriers to employment, with the aid of collaborative partners, may greatly enhance the prospect for recovery and should be addressed as a component of treatment planning. For people with disabilities who have never worked, the lack of work skills and an employment history will be an added difficulty in securing employment.
Planning for full employment will be more challenging; in some cases it may even be an unrealistic goal. In some cases, the treatment plan may call for part-time work, volunteer work, or other activities that will enable the individual to experience achievement and appreciation. However, given appropriate accommodations and an imaginative approach to the job search process, many more people are employable than might at first be apparent.
Providers should be aware that successful sobriety and employment might mean the loss of medical or other benefits that are perceived as essential for survival. Providers should also recognize that there is an ongoing national debate about the appropriate public assistance policies for people with disabilities.
Common Needs of People With Disabilities in Primary Treatment
Clients with disabilities may have distinct needs that impact treatment and will need to be addressed through case management. Ideally, these issues should be considered by a multidisciplinary collaborative team, including a disability advocate, working together to address the client's needs. Figure 4-5 briefly identifies needs or issues that may arise, their possible impact on treatment, and resources that might assist the case manager in addressing these concerns.
Linkages in Aftercare
Because of the many situational factors that may facilitate or impede recovery, careful planning for aftercare is required and little can be taken for granted. Examples of key differences in aftercare likely to apply to many persons with disabilities follow:
Using Linkages to Address Common Challenges
Developing interagency linkages
Accomplishing linkages to other agencies cannot be taken for granted, and additional steps may be required. Ballew and Mink (1996) identify five "tasks" related to linking that should be addressed prior to client contact with the resource agency (see Figure 4-6).
For people with disabilities it is important that the treatment provider not send the client to another agency for care without first checking to ensure that the client will be able to access the services. For example, in the process of rehearsing the plan described above, the provider may find that a lack of ramps, poor facilities for battery maintenance for wheelchairs, or inaccessibility to public transportation may be significant barriers for the client.
Specific problem-solving steps will vary from client to client; for some, it may be important to ensure that someone accompanies the client to the first meeting. For others, a simple drawing of the route showing bus stop and ramp locations may sufficiently alleviate anxiety to enable the individual to make the connection without further assistance.
Persons with disabilities on medication
The need for medication required because of a disability may mean that a client is not viewed as "clean." A client with a mental disability may rely on prescription drugs to stabilize mood and reduce the negative impact of the disorder; a client with a physical disability may depend on pain medication; and a client with epilepsy may use dilantin, a barbiturate-like drug, to control seizures. Some 12-Step programs may view such medications as a "crutch." Some halfway houses may also have policies that would deny admittance to people who are using these, or similar, medications (even though such policies are in conflict with the ADA).
A client's physician may inadvertently be enabling a client's substance use. A physician who is sincerely trying to help his patient might prescribe pain medication for a chronic physical disability rather than investigating alternate means of managing the pain. Other prescription medications can become drugs of abuse. For more information on the abuse of prescription and over-the-counter medications see TIP 26, Substance Abuse Among Older Adults (CSAT, 1998).
Family and caregivers
Family and caregivers may be barriers to treatment rather than sources of support. For any number of reasons (e.g., to make life easier for themselves, to maintain current patterns of relationship) family members may contribute to the individual's continued substance use. In some cases, they may do so with the best of intentions. Because they feel sorry for the person who is disabled they may even encourage substance use as a way for their family member to feel better about herself (Schaschl and Straw, 1989). The family and other caregivers may also be overprotective of the individual and undermine the potential for a greater degree of independence. On the other hand, they may be weary from the strain of providing care and appear indifferent to the recovery process. For these reasons, family and caregivers should be included in treatment planning whenever possible.
Isolation of client
Some people have experienced isolation because of their disabilities, and may have a relatively limited social circle. If isolation was a contributing factor in the development of addictive behavior, the return to relative isolation after the intensity of treatment is of even greater concern. Because the self-care and preparation required to leave home are time consuming and may produce anxiety, people with disabilities may have more difficulty going out to engage in social contacts. Clients who perceive options for social contact as limited may have particular difficulty refusing alcohol from friends who visit and assume that alcohol will be shared.
Limitations of disability
A disability may limit the leisure activities available to a client. For those with moderate to severe disabilities, the nature of the disability may require special attention for identifying suitable leisure activities. Outside organizations can be extremely useful in finding or establishing such activities.
Uncertain client-employer relationship
Clients who are employed may wish to avoid involving their employer in a recovery plan for fear of jeopardizing employment. In some instances, the employer's policies may threaten
recovery. While these are common client concerns, people with disabilities often have more difficulty securing employment, and thoughtful management of the return to employment may be especially important.
Longer monitoring period needed
More frequent monitoring over a longer period of time than is common may be required for people with disabilities. Creative strategies may be needed to ensure that monitoring occurs with sufficient frequency to identify relapse triggers in spite of funding limitations. For example, e-mail or automated telephone calls have been used to facilitate monitoring that requires less time than direct or face-to-face contact.
Too often, the needs of people with disabilities who have substance use disorders are either not met at all or met inadequately. Many systemic factors can contribute to poor or nonexistent treatment. Because of these systemic barriers to treatment, many believe, as does Rebecca Sager Ashery, that case management must involve active community advocacy and systems intervention in order to be truly effective (Ashery, 1992). The activities of such a coalition could, she suggests, include
Substance use disorder treatment providers and disability service providers can and have worked together to meet one or more of these goals. For those seeking systemic change, a key step has been collecting data that demonstrate unmet needs. For example, data derived through screening people for disabilities may be useful in advocating for increased funding, particularly when several providers are able to offer similar data. Disability organizations may also be able to provide data on the prevalence of certain disabilities within a given area, adding specificity to estimates of unmet needs. Such data can be used to justify new risk pools and create functional carve-outs that benefit persons with disabilities who have substance use disorders. By sharing these data with decision-makers in managed care or public health policy, coalitions can help create an awareness of needs that may lead to enhanced resources.
Providers concerned with community advocacy may either start a task force from scratch or convince an existing task force to work to improve access to substance use disorder treatment for people with disabilities. Those who should be represented on such task forces will vary according to community characteristics and task force goals. Common participants include representatives of treatment programs, rehabilitation services, disability advocacy or service organizations, mental health agencies, volunteer organizations, funders, community leaders, and consumers of disability and substance use disorder treatment services.
Many providers have chosen to work through existing coalitions. Fortunately, in the arena of substance abuse prevention, many local coalitions exist throughout the United States whose mission is to reduce substance abuse in a community. (See Figure 4-7 for a few examples from the State of California.) These coalitions may be funded by local, State, or Federal sources or by private foundations. Many of these organizations have board members who are concerned about the prevalence of substance use in their community. However, members of these organizations are often unaware of the degree to which people with disabilities are affected by substance use disorders. Treatment providers who are able to demonstrate need and suggest specific activities that would benefit the community may persuade these already funded community coalitions to assist in making changes that will benefit people with coexisting disabilities.
Treatment providers interested in approaching existing coalitions may want to consider adapting the following step-by-step strategy:
Chapter 5 -- Administrative Tasks
While it is important for substance abuse counselors to understand the emotional and practical needs of individuals who are living with coexisting disabilities, program administrators also play an important role in their treatment, by ensuring that staff are properly trained and by modifying components of programs as needed. Substance use disorder treatment programs should take definite steps to improve treatment for persons with coexisting disabilities and be in compliance with accrediting agencies and regulations. Programs need to demonstrate an organizational commitment to assist those with disabilities; apply specific measures to eliminate barriers (either physical or procedural) to treatment; and develop treatment plans that take into account the particular needs and problems of people with coexisting disabilities.
There are definite legal and ethical motivations to modify programs to accommodate people with coexisting disabilities. Certainly, the Americans With Disabilities Act (ADA) is one motivator for this type of outreach (see Chapter 1 and Appendix D for more information on the legal ramifications of the ADA), but there are others (see Figure 5-1). The inclusion of people with coexisting disabilities will increase the diversity of a program and prove an enriching experience for all those involved. Expanding treatment to include people with coexisting disabilities presents a real opportunity to ask program funding sources for additional money, since there will be new people to be served who may be insurance or Medicaid reimbursable. Agencies should not, however, seek to serve clients with disabilities simply because they represent increased funding; this could lead to the provision of substandard services.
Additional services for people with coexisting disabilities should have a positive impact on substance use disorder treatment outcomes. For example, a program with a small percentage of individuals with traumatic brain injury (TBI) who are not completing treatment would likely show an improvement in overall treatment outcomes if they received appropriate services for their disability. Programs serving individuals with cognitive disabilities may find greater success rates if abstract concepts are simplified, and if reading and writing tasks are tailored to the cognitive level of the individuals.
Provider Knowledge of People With Disabilities
Substance use disorder treatment programs must become aware of their legal obligations and teach their staff some basic information about people with disabilities. Staff should understand, in particular, the factors that can affect a person's understanding of her coexisting disability, the many related problems that often accompany a disability, and the emotional responses someone might have to her own disability. Staff can learn about the needs of people with disabilities in several ways:
For people with coexisting disabilities, as for any particular population, the higher the cultural competence of the program and staff in understanding the needs of this population, the higher the likelihood that they will be engaged and maintained in treatment. Persons with coexisting disabilities should be able to talk about their disabilities with program staff and feel understood and accepted. However, they should not have to feel that they must educate treatment providers about how to meet their needs.
A program demonstrates its commitment to working with people with coexisting disabilities from the top down. While there may be no substitute for a counselor's understanding of her clients, the counselor needs the support of her treatment program if she is to effectively apply that knowledge. It is the program that must demonstrate commitment if it is to attract persons with coexisting disabilities, and it is the program that is responsible, in the long run, for training its counselors to work with people with coexisting disabilities, and not the counselor who is responsible for educating the program.
Policies and procedures
To ensure full organizational support for treating people with coexisting disabilities, the Consensus Panel recommends that a treatment program develop a policy statement that articulates the program's willingness to accommodate any individual with a disability who chooses to attend the program. Title III of the ADA requires that programs prepare a plan stating how they would serve a person with a disability. Therefore, the policies and procedures manual should be reviewed and revised to describe how the program would make an accommodation. Questions to address in the manual include: What is the process for asking for an accommodation and for assessing whether the program can make it? Who is responsible for instituting the process (asking for the accommodation)? Who decides whether the program can make the accommodation or whether it would impose an undue burden? What procedures should be followed when a person must be referred elsewhere for services?
A program's basic values and philosophy are reflected in its approach to a person whose impairment presents a challenge to the "standard" treatment plan. Treatment providers understand the anxiety most people experience when they make the first step toward getting help for an addiction, as well as the small window of opportunity that may exist to provide treatment. In response, many programs have developed formal or informal "open-door policies"; people who appear at such facilities without an appointment are seen, if only briefly, to arrange further care. An open-door policy means that no one is turned away or denied services. Instead, all people seeking treatment are assessed and a decision is made whether or not the program can meet the needs of the potential client.
However, many treatment providers' clinical experience has made them aware that treatment that is inappropriate for a person's current needs or situation may actually be harmful. For example, inappropriate treatment may use up a person's insurance resources while providing little or no gains in return. The sense of "failure" resulting from such unhelpful treatment may establish a precedent that the individual will use to justify avoiding treatment in the future. Indeed, the patient placement criteria of the American Society of Addiction Medicine, which are being used to define publicly funded care in several States, stipulate that if a program cannot provide a client with the necessary level of care, the program should not treat that client; instead an appropriate referral should be made (American Society of Addiction Medicine, 1996). (See Chapter 4 for more information on the importance of linkages in referring individuals for treatment.) In developing a policy statement about the program's commitment to serve people with coexisting disabilities, administrators and staff should consider these issues.
In making a commitment to treat persons from any particular population, one question that often arises is whether a member or members of that group will be appointed to the board of directors. The level of representation on the board (i.e., whether one or several members from a group are appointed) should, and sometimes does, reflect the proportion of that group in the treatment population. Many have argued that board membership of people with disabilities (or the lack of it) is a measure of the strength of a program's commitment, and that having several people with disabilities at this high administrative level will have a strong "cascade" effect on the program as a whole.
Others may feel that such mandates for board membership tie the hands of administrators and may not be the best way to ensure that the needs of all people with disabilities are met. For example, an individual appointed to the board who is blind may be effective in raising issues about persons who are visually impaired but not about persons with learning disabilities. As an alternative, some organizations form an advisory group or a task force made up of individuals who have different disabilities and chaired by a board member. However, some advocates may argue that task forces do not always produce real change. To be effective, an advisory group must have the ability to act upon its findings.
When a program makes a commitment to serve people with coexisting disabilities, board membership of people with disabilities may be implemented immediately or considered a goal to be reached as the program begins to serve a greater number of people from these groups. A program should try to obtain regular input from the community it seeks to serve, and creating a permanent task force or an advisory committee is an ideal way to address this need. But board members or advisory committees may have an important advocacy function without being experts on implementation, and programs will still need to obtain technical or consulting services related to specific disability issues.
Hiring persons with disabilities
Another sign of organizational commitment is to hire people with disabilities to work in the treatment program. Hiring people with disabilities also benefits other staff members, who can learn from these coworkers. Having such staff members can help sensitize others to issues, help differentiate between enabling responses and appropriate accommodations for people with coexisting disabilities, and provide encouraging role models for them. A person with a disability should not be assumed to be an expert on every type of disability and all disability issues, however. The extent of familiarity an individual will have with legal issues and the functional implications of disabilities will also vary according to that individual's background.
While it may not always be easy to find qualified staff who have disabilities it is worthwhile to actively seek such personnel. If a person with a coexisting disability is not available to serve as a counselor, a person with a disability (perhaps a former client) can still serve a function as a "client advocate" and act as a liaison between administration and clients.
Monitoring the program's efforts
The program must make a commitment to continually reexamine its effectiveness for people with coexisting disabilities. As knowledge concerning the treatment of people with coexisting disabilities grows, it is expected that further changes to the program will need to be made. The main question to consider is, "Are we doing what is necessary to meet the needs of clients?" Such inquiry can take place formally, using quality assurance methods and consumer satisfaction surveys, and informally, using an anonymous suggestion box or by routinely asking clients whether their needs are being met.
One useful strategy is to routinely set aside a specific time at staff meetings to ask staff members for evidence that goals are being met, or not being met. For example, during a meeting at a therapeutic community, it might be asked whether the residents have been adequately apprised of the needs of a person with a disability who is scheduled to enter the community. Have they been given the opportunity to discuss how those needs might differ from other residents' needs? Has the incoming person been assigned to a "buddy" for peer support if that is the policy? Has the buddy received training or information in order to be sufficiently prepared? What specific steps are being taken to accommodate the new person's needs? For example, have certain household tasks been modified so that they can be performed by the new resident?
One concept that has remained largely unchanged in the treatment field is the importance of the bond that forms between a client and a counselor or group leader when the client feels understood and accepted. Without such bonds, it is difficult for a person to summon the commitment and courage needed to undertake recovery. In order for this understanding to develop the counselors must have knowledge of the particular needs of their clients. Staff training is essential to ensure this communication and understanding.
All program staff should be trained to understand functional limitations and capacities, the wide variety of conditions that lead to them, and the barriers that treatment-as-usual may present for persons with specific disabilities. Without this training, true organizational change cannot occur. Training modules using didactic and experiential methods have been designed for staff at all levels, including managers, program and clinical directors, clinical staff, and support staff. One approach is to provide a "disability awareness experience" in which staff role play and take on a specific disability for a period of time during which they have to do what is expected of the clients. In this manner they experience first-hand the problems, issues, and barriers a person with a disability might face, and can gain a better understanding of what it is like to have a decreased or altered level of functioning. At all levels of the program, training should strongly encourage and reward staff members who find creative ways to adapt treatment procedures for people with coexisting disabilities. A variety of disability organizations in the community can assist the program with training by providing materials and speakers. (For more information, see Appendix B, Resources for Information About People With Coexisting Disabilities.)
As with all groups who have been isolated and stigmatized, stereotypes and myths about people with disabilities abound, and fears may distort staff members' perceptions. A good training program will begin by eradicating such myths and replacing them with knowledge, skills, and a welcoming attitude. Staff should be encouraged to express their fears and to examine their beliefs. (See Figure 5-2 for some questions staff may wish to consider when examining their disability-related beliefs.) This initial training for all staff should be followed with more specific and specialized training focusing on different disabilities, the functional limitations associated with those disabilities, and possible treatment modifications and accommodations. Sometimes a brief staff training to address the needs of an individual slated to begin treatment helps bring an immediacy to the situation, which is beneficial.
Considering how pervasive some coexisting disabilities are within treatment populations, staff training in this area should also be ongoing and involve staff sharing their experiences in working with people with disabilities. In addition, with training, staff will become increasingly aware of the hidden disabilities of clients with whom they are already working. The program will benefit from this clearer clinical picture of the treatment population, and improved treatment outcomes can result.
Training of support staff is also important since these staff members are often a person's first contact with the program. A potential client's initial conversation with a receptionist or other support staff often forms her perception of the program. The success or failure of these interactions often determines whether or not the intake interview occurs at all. A warm and friendly reception is important for any person taking the difficult step of seeking substance use disorder treatment, especially for someone with a disability worried that he will not be accommodated. The message from the first contact should be upbeat, proactive, and geared toward allaying the person's anxiety and creating an initial bond. Receptionists and other support staff should receive special training to prepare them to respond knowledgeably and sensitively to people with coexisting disabilities; they should have the necessary practical skills, such as the ability to use a TDD or other common assistive devices, and a knowledge of basic disability etiquette.
Treatment for substance use disorders can often involve multiple funding streams, and treatment for people with coexisting disabilities may add new complexities, as well as opportunities, to the process of securing funding. Services may acquire funding from a variety of sources, including
To provide sufficient funding for the longer and more complex supports that may be required for a person with a coexisting disability, blended funding is highly recommended. When several agencies have a mandate to provide care, as is the case for many people with coexisting disabilities, each may have access to funds for case management. Alone, no one agency may have enough funds to address the demanding case management issues that could arise in treating persons with multiple or severe disabilities. However, blending funding may enable the coordinating team to create a pool of funds sufficient to fund a single case manager at an acceptable level.
Programs might consider collaborating with rehabilitation and other providers to share resources. For example, a substance use disorder treatment program might carry educational and treatment services into a vocational rehabilitation site. Carry-in services reduce the overall cost of separate programs and may, in certain cases, allow for third-party payment for both providers. In these cases, there is not a blending of funding, but rather a sharing of costs and a potential for mutual billing. (See Chapter 4 of this TIP for more information on the establishment of linkages that could be used to create blended funding.)
With low-incidence populations such as individuals who are deaf or hard of hearing, it may be more cost effective for States to use regional programs where fluently signing staff and interpreters for nonfluent staff are readily available. In some of the more rural States, there may not be enough individuals requiring treatment at any given time to have a separate, statewide program. But even in a well-populated State like New Jersey there has been a call for the use of out-of-state services (see Figure 5-3).
Funding Under Managed Care
For people with coexisting disabilities, managed care policies can pose a serious barrier to getting the level of treatment they require. Examples of managed care policies or limitations that could adversely affect clients include
Poor self-advocacy skills, often coupled with low self-esteem, may impair a person's ability to "push" the system in order to get the care she needs. A case manager may have to either find strategies to overcome the adverse effect the managed care provider's policies have on the client or seek to change those policies through direct communication with the managed care agency. Managed care agencies should be held responsible for the effect of their policies on client outcomes.
For example, some managed care treatment programs use capitation to identify and contain costs for particular disability groups. Due to decreased stamina or other disability issues, some individuals benefit more from a program of lower intensity but longer duration. Preliminary research data indicate that some clients with disabilities may require more extended treatment--from several months to over a year longer--but with no more than standard outpatient intensity (Hser et al., 1988; Drake et al., 1996). For this reason, the treatment provider may find it necessary to document the client's unmet needs and negotiate managed care waivers or special plans to improve chances for a positive outcome.
By documenting and communicating the accommodation needs of people with coexisting disabilities, providers can sometimes persuade state officials to make systemic changes that will benefit these clients, increasing positive outcomes and thereby benefiting their communities as well. For example, in New York State, where everyone applying for public assistance is screened for substance use disorders, 18 million dollars are set aside annually for treatment. Such functional "carve outs" can also be used to address the need people with coexisting disabilities often have for extensive and extended case management services to facilitate their recovery. Treatment providers should have a thorough knowledge of the rights of people with disabilities in order to recognize when managed care policies are discriminatory and not in compliance with the ADA.
Marketing the Program
It is not enough for a program to simply be ready to serve the Disability Community. Rather, the program should be proactive in making the Disability Community aware of its services, to ensure that disability organizations will support referrals to the program. It is hoped that any program that makes a commitment to treat people with coexisting disabilities will be in contact from the outset with a variety of disability organizations in the community. Staff members should be available to present their agency and its willingness to provide services for people with disabilities at the meetings of disability organizations, thereby providing a personal contact for referring staff. Of course, the best advertisements for a program are people with successful treatment outcomes.
Outreach materials should assure potential clients that an agency is able to provide accessible, appropriate substance use disorder treatment for people with coexisting disabilities. In addition to stating that accommodations and alternative communication strategies can be provided as needed, providers may wish to assure people with disabilities that they are welcome by including the universal accessibility symbol on their literature.
There are many facets of an outreach program that can be modified to accommodate the needs of people with coexisting disabilities:
Substance use disorder treatment providers can establish a relationship with a colleague or more experienced clinician who is familiar with the Disability Community to assist in outreach planning. This individual can help interpret unfamiliar terminology for the treatment provider. Since neither party is an expert in the other's field, there is an excellent opportunity for an equitable relationship in which each party learns from the other. Centers for Independent Living are required, for example, to provide information, referral, and advocacy services. However, there are currently no existing mentorship programs or recognition of this need by national organizations. In addition to mentorship, providers can form or participate in an existing network that is disability-specific.
In making an effort to connect with other fields, programs must consider why other providers would want to collaborate. A key motivating factor for other groups of providers is the ADA, because they must also accommodate persons with substance use disorders. What is important is that linkages begin to be developed; it will, of course, take time for these relationships to be perfected.
Considering the high incidence of substance use disorders among people with disabilities, it is extremely important for substance use disorder treatment providers to be aware of this population's needs. Every treatment provider should expect to have clients for whom they will need to make accommodations, but many of these accommodations will not require extensive or expensive changes. Perhaps even more importantly, making accommodations and adapting treatment for people based on their functional limitations should improve treatment outcomes overall and should enable the program to provide better services to all clients. Better outcomes and improved services should result in more referrals and more satisfied customers.
Appendix A -- Bibliography
Alterman, A., and Tarter, R.