Substance Use Disorder Treatment For People With Physical and Cognitive Disabilities Treatment Improvement Protocol (TIP) Series 29
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:
Read this TIP and the resources cited in its bibliography.
Train staff that substance use disorders are a disability and about the limitations imposed by the disabling characteristics of substance abuse and dependency.
Participate in training that addresses the impact of physical, cognitive, sensory, and affective disabilities and the impact of a coexisting substance use disorder. Teach how those dual diagnoses affect significant others and family.
Train staff concerning barriers to treatment for people with coexisting disabilities and how best to remove them. Such training should include, among other things, daily living skills strategies, information on the use of assistive devices, and ways to manage the living environment.
Bring in outside providers with specialty in treating substance use disorders and disabilities to do in-service trainings. It may be helpful to use people with disabilities as trainers. Doing so will give the staff an opportunity to learn how to interact with people with disabilities and overcome their own prejudices and fears.
Train staff how to work with interpreters, how to use the Telephone Relay Service and Telecommunication Devices for the Deaf (TDDs). Staff should know how to access necessary people and devices. Telephone companies rent TDDs at a very low monthly rate, and some service centers located in a variety of states loan out equipment such as television decoders, visual alarm systems, and TDDs.
Teach staff the proper etiquette to use with people who have physical and cognitive disabilities.
Be sensitive to people with coexisting disabilities and consult them about their needs. Staff can learn a great deal from talking to them. While staff may feel it is impolite to inquire about a person's disability, consulting the person is necessary to provide appropriate accommodation. If a provider won't talk to a client about his disability, the client may get the idea that it is too shameful to discuss it.
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.
Organizational Factors
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.
Organizational Commitment
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.
Board membership
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?
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 Mechanisms
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
Block grants from Federal agencies
Medicaid, which includes options that allow for nonmedical services (e.g., the Medicaid rehabilitation option)
Medicare and Supplemental Security Income for people with disabilities
Migrant health funds
Private organizations, such as United Way
Veterans services
Developmental services
Local tax dollars
Private foundations
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
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.
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
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.
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