Substance Use Disorder Treatment For People With Physical and Cognitive Disabilities Treatment Improvement Protocol (TIP) Series 29
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
The single agency
The informal partnership
The formal consortium
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
Number of people served with disabilities
Types of disabilities people in treatment have had and the number of people with each disability
Examples of disability-related barriers encountered and how they have been addressed
Current retention and completion rates for people with disabilities
Linkages used to address disability-specific problems, and their effectiveness
Gaps in linkages that still need to be addressed
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
The number of its clients who might be expected to have disabilities on the basis of national or State incidence data and whether the actual number of clients with disabilities is lower than expected
How it has publicized its services in the disability community, and how it might better serve people with disabilities through differently placed or more accessible outreach materials, or through direct contacts with disability advocacy and resource agencies
Whether the agency is physically inaccessible or perceived as inaccessible
Whether the agency's admission policies and procedures deter people with disabilities
Whether the current assessment process is adequate to detect hidden disabilities that would commonly be missed
Having this information will make it easier for programs to identify their needs and present them to other organizations and agencies.
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.
CILs--These nonprofit organizations are under the control of people with different types of disabilities. They are nonresidential and provide advocacy, information, independent living skills training, and peer counseling, among other services, for people with disabilities. CILs vary in terms of the scope of services they provide, number of staff and their areas of expertise, consumer groups served, and advocacy activities. However, all share the goal of empowering people with disabilities to achieve the most independent lives possible. Many CIL staff will need training in identification and assessment of substance use disorders in order to function as effective partners. It is important to note that the term "Independent Living Center" (ILC) is also used by nonaffiliated centers that may provide different services, such as live-in facilities.
Disability Advocacy and Service Groups--A wide range of advocacy and service groups are organized to serve persons who have specific disabilities or share a certain type of impairment. Their missions may be to provide training, consulting services, technical assistance, or resource material. Programs that begin working with a person who has a disability they have not yet encountered should consider contacting an appropriate advocacy and service group to ask for information, to explore linkage possibilities, or to locate specialized services.
Vocational Rehabilitation Centers--Each State has an agency focused on providing vocational training and rehabilitation services to people with disabilities with the goal of placing these individuals into competitive employment. There are field offices located throughout each State and qualified professionals to work in an advocacy and case management role.
Rehabilitation Research and Training Centers (RRTCs)--The National Institute on Disability and Rehabilitation Research (NIDRR) funds over 40 RRTCs devoted to specific disabilities or disability-related issues. Different RRTCs focus on topics such as spinal cord injury, traumatic brain injury, mental illness and long term employment, managed care, family issues, deafness, aging, or Native Americans with disabilities. (Appendix B lists contact information for NIDRR and selected RRTCs).
Disability Business Technical Assistance Centers (DBTACS)--NIDRR has funded a network of 10 regional DBTACs. These centers provide information, training, and technical assistance to businesses and agencies covered by the ADA and to people with disabilities who have rights under the ADA. They are often well connected with disability resources and agencies within their region and can assist with referrals. In addition, they distribute a variety of resources pertinent to ADA compliance at cost or free of charge.
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:
The treatment center administrator or program manager reviews the needs of clients with disabilities, based on screening results at intake or referral information.
The program designated surveys community resources and agencies that provide services for people with disabilities and contacts personnel in these agencies to establish linkages.
The contacted agency assists in formulating treatment and recovery goals for the person with a coexisting disability. For example, a client and his counselor might attend an orientation session at a local CIL to determine what services are offered that he could use during aftercare.
During a period of informal information and service exchange, administrators determine whether cross-training activities for their respective staff members might be beneficial.
Other disability service providers are invited to participate in cross-training. For example, a resource fair of disability service organizations might be attended by treatment provider staff, or a representative of the treatment agency could give a briefing on substance use issues to staff members at a local halfway house.
If training or awareness activities are beneficial, and if services provided appear useful to the client, more formal ties with the disability service provider may be initiated to better serve future clients.
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
Training and consultation on effective substance use disorder screening methods
A referral resource for services agencies
Training and consultation on the dynamics of substance use disorders and its intersection with other disorders and conditions
Training on how to provide relapse prevention plans that also address disability concerns
Case-specific consultation for people with substance use disorders
The disability resource agency can provide
Assistance in modifying policies and procedures to avoid inadvertent discrimination
Assistance with increasing accessibility for persons with disabilities
Training for counselors to help them individualize treatment plans
Access to specific programs, such as specialized employment programs offered through vocational rehabilitation agencies
Support for people with disabilities in recovery who live in group homes or halfway houses
All agencies can
Communicate at stated intervals to ensure consistency in coordinating treatment plans for mutual clients
Conduct case consultations
Conduct on-the-job training and cross training for staff
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.
Addressing Discrimination
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.
Linkage strategies
Disability Business Technical Assistance Centers, Federal enforcement agencies, statewide protection and advocacy groups, Legal Aid and other community-based legal services, CILs, and many disability advocacy groups may be able to provide clarification of legal requirements and documentation.
Disability service groups can also help the client develop and exercise self-advocacy skills.
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.
Linkage strategies
CILs and community mental health centers may offer peer group and individual counseling, as well as an extensive array of information on disabilities.
National or local organizations that work with people who have specific disabilities, such as the National Multiple Sclerosis Society, may also offer information or counseling services for people with disabilities.
Individuals with recently acquired disabilities may need a mentor to help them learn to maximize mobility and access needed services.
Some people with disabilities may benefit from self-advocacy skills and assertiveness training to enable them to be proactive and secure the resources they need. This training may be available through CILs, vocational rehabilitation agencies, and community mental health centers.
Provider staff may be unfamiliar with nuances of behavior and concerns for people with disabilities. They may benefit from training provided by a collaborative partner with expertise in disability issues, such as a disability service group or CIL, in order to recognize and address these issues effectively in treatment.
Seeking Employment
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.
Linkage strategies
State vocational rehabilitation agencies can provide coaching on resume preparation and interview skills; they may also provide job training and purchase tools.
CILs can provide help in developing job skills and finding employment.
Employers with specialized hiring programs are excellent contacts. Employers who are able to hire large numbers of persons with disabilities, such as Goodwill Industries, may also be able to suggest other agencies.
Local or State commissions may exist that address employment issues for persons with disabilities.
The Job Accommodation Network provides free advice on accommodations for particular tasks (see Appendix B).
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:
Ongoing and more frequent monitoring may be required, sometimes using different communication channels.
Friends, family, and advocates are often especially material to the recovery of a person with a coexisting disability because of a higher degree of reliance on their care and support.
The circle of people involved with recovery may be larger; for example, the support of attendants, residential facility staff, or home health care providers may be critical.
Modifications to "typical" aftercare plans are likely to be required. Provisions for transportation and communication aides may be necessary.
Service coordination and case management responsibilities are more prominent and time consuming than for clients without disabilities.
The transition counselor for the referring program may need to brief outpatient program staff on the client's needs, functional limitations and capabilities, and suggest accommodations or modifications to usual procedures.
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.
Linkage strategies
Disability advocacy agencies may be able to suggest effective communication and memorization strategies.
Alcoholics Anonymous intergroup offices should be able to identify meetings that are able to accommodate people with disabilities; however, all meetings should be visited first to ensure that this information is correct. Some local meetings may be willing to provide a guide or "buddy" to help the client attend and participate in meetings.
It may be helpful or necessary for someone to take the client to a service agency. For example, this type of assistance may benefit persons whose cognitive impairments make it difficult to follow directions, and persons with mobility impairments whose concerns about accessibility may otherwise prevent their acting on the referral. This role may be taken by a designated anchor: a family member, friend, disability service advocate, church member, parole or probation officer, peer or mentor, attendant, health care worker, vocational rehabilitation staff member, caseworker, or volunteer.
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).
Linkage strategies
Negotiate with "downstream" providers to ensure that services are available to people regardless of their medication use.
Contact the American Society of Addiction Medicine to obtain the names of physicians knowledgeable about addictions; facilitate a consultation with the client's physician.
Arrange for the treatment agency's staff physician to write a note to the private physician on followup planning and suggest a meeting.
Work with health maintenance organizations to develop physician protocols that provide guidance on the distinction between enabling substance use and appropriate pain management.
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.
Linkage strategies
Family counseling services, provided through a community mental health agency, may help family/caregivers to function as effective "anchors."
Families should be included in reentry planning through releases from the client.
Recommend literature to families that addresses enabling behavior in general and for people with disabilities in particular. Disability resource agencies may be able to provide helpful literature.
For some families federal money for respite care may be available.
Information on respite care or respite services may be available through the State Unit for Developmental Disabilities, the United Way, and the Social Service Clearinghouse.
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.
Linkage strategies
Practical steps should be taken to connect the client with an accessible sobriety group or recovery community. It will be helpful to have someone available to accompany a client at first, or have him begin participating in these programs several weeks before he is discharged.
For people whose interaction skills are limited, training in social skills or peer counseling may be helpful. Training may be available through CILs, community mental health centers, university disability student services, vocational rehabilitation programs, and programs for mental retardation and developmental disabilities.
Establish connections with peer role models, especially those with disabilities, through 12-Step groups and disability advocacy/service groups.
Some disability organizations, such as CILs, HIV agencies, American Council of the Blind Service Centers, and Department of Veterans' Affairs offices, offer support groups and social activities.
Various community groups may sponsor substance-free picnics and parties.
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.
Linkage strategies
If disability groups with whom the client is affiliated use alcohol as an integral part of social functions, the provider may offer awareness education (formally or informally) to encourage the provision of nonalcoholic alternatives. Many disability-related, community organizations would be willing to develop substance-free activities if they were aware of the difficulties faced by people with disabilities leaving treatment and trying to maintain sobriety.
Providers should facilitate contact with local parks and recreation departments. Under the ADA, public parks and recreation are not permitted to exclude people with disabilities from events for which they are "otherwise qualified" or levy surcharges when they participate.
Many groups offer challenging outdoor or sports activities specifically adapted for people with disabilities. Providers can contact groups such as the Blind Outdoor Leisure Development (BOLD), Wheelchair Olympics, and Wilderness International.
The National Library Services for the Blind and Physically Handicapped can provide materials on recreational activities (see Appendix B). State and local libraries for the blind and physically disabled will also have resources available.
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.
Linkage strategies
DBTACs, local disability law centers, Equal Employment Opportunity Commission, and civil rights commissions or offices may provide legal counsel or information concerning employment issues.
Encourage the client to use Employee Assistance Programs if they are available.
Consider meeting with the employer to facilitate understanding of recovery needs (such as providing an alternative to alcohol at work-related events).
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.
Linkage strategies
Use a Community Health Rap, a line that enables the health professional to record answers to questions and make them available to others.
Set up telephone support groups that enable people to access a telephone conference in lieu of a face-to-face meeting.
Automated periodic telephone contact can be used to detect and prevent relapse; a telephone reminder system may be particularly useful for patients with memory impairments (Alemi et al., 1992).
Community Partnerships
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
Documentation of gaps in services
Documentation of service duplication
Examination of eligibility criteria
Formation of a comprehensive referral network with formalized mechanisms of referral
Development of communication channels between agencies
Ability to merge services where needed
Ability to address gaps in services
Political advocacy for more resources and/or making changes in the service system
Data collection and evaluation
Quality assurance of programs
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:
Identify a local, countywide, or statewide effort whose mission it is to help reduce substance use (Mothers Against Drunk Driving, Governor's Alliances, federally funded community partnerships and coalitions, boards of large prevention and treatment agencies).
Develop and present (ideally in concert with a disability services provider) the issues of people with coexisting disorders.
Gain commitment to provide further education and training, including the development of a short-term action plan that includes constituency.
Evaluate how effective the partnership is in helping people with disabilities.
Publicize and reward the efforts of the coalition or partnership with public acknowledgment.
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