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:

1. The treatment center administrator or program manager reviews the needs of clients with disabilities, based on screening results at intake or referral information.
2. The program designated surveys community resources and agencies that provide services for people with disabilities and contacts personnel in these agencies to establish linkages.
3. 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.
4. During a period of informal information and service exchange, administrators determine whether cross-training activities for their respective staff members might be beneficial.
5. 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.
6. 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.

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.

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.

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.

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.

Using Linkages to Address Common Challenges

Organizational Commitment

Staff Training

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.

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

• Lack of access to Health Maintenance Organizations (HMOs)
• Being placed on a waiting list by public HMOs
• Loss of funding due to capitation policies when treatment is required over long time
• Restrictions on needed ancillary medical or physical care
• Not being allowed to use accessible treatment options

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.

Outreach

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:

• Tailor marketing materials, including signage, messages, brochures, and yellow pages advertisements to people with disabilities. Have all such materials state that accommodation is available.
• If the treatment program is committed to serving persons who are deaf or hard of hearing, have a dedicated line for a TDD, and have that TDD number printed on all outreach materials.
• Create and use mailing lists of organizations that work with people with disabilities.
• Conduct specialized presentations and cross-training to organizations that serve people with disabilities.
• Offer substance use disorder training for the Disability Community at large.
• Adapt conference exhibits to show the program's accessibility for people with disabilities.
• Recruit people with disabilities to the board of directors and staff positions.
• Establish service agreements (e.g., agreements with organizations to provide a learning styles inventory for people with cognitive impairments).
• Link with particular disability groups for their expertise and to create training opportunities for the treatment staff.
• Encourage organizations that represent people with disabilities to conduct outreach to a variety of cultural and ethnic communities.

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.