Access barriers to substance abuse treatment for persons with disabilities: An exploratory study

Journal of Substance Abuse Treatment 31 (2006) 375 – 384

Regular article

Access barriers to substance abuse treatment for persons with disabilities: An exploratory study Gloria Krahn, (Ph.D., M.P.H.)a,4, Nancy Farrell, (Dr.P.H., Psy.D.)a, Roy Gabriel, (Ph.D.)b, Dennis Deck, (Ph.D.)b a

Oregon Health and Science University, Portland, OR, USA b RMC Research Corporation, Portland, OR, USA

Received 4 January 2006; received in revised form 9 May 2006; accepted 14 May 2006

Abstract Research in substance abuse (SA) treatment has demonstrated that persons with disabilities (PWDs) are at substantially higher risk for SA than persons without disabilities. Despite their higher risk, PWDs access SA treatment at a much lower rate than persons without disabilities. Using the Behavioral Model for Vulnerable Populations as a research framework, we identified reasons for differences in access to SA treatment for Medicaid-eligible adults with disabilities in Oregon through a multiphase study. Analyses of demographic and referral source data, along with interviews with key state agency representatives, adults with disabilities, and treatment program personnel, helped identify barriers to SA treatment access. These barriers are reflected as attributes of PWDs, contextual variables that enable or impede access, recognition of the need for SA treatment, and characteristics of treatment services. The findings suggest needed policy and practice changes to increase access rates for PWDs. They provide direction for future research. D 2006 Published by Elsevier Inc. Keywords: Substance abuse treatment; Disability; Barriers

1. Introduction As a group, persons with disabilities (PWDs) use alcohol and drugs proportionately more as compared with the general population. Research in substance abuse (SA) treatment has demonstrated that PWDs are at substantially higher risk for alcohol abuse and SA than persons without disabilities (Gilson, Chilcoat, & Stapleton, 1996; Moore, Greer, & Li, 1994; Moore & Li, 1998; Rasmussen & DeBoer, 1980; Stern, Byard, Tomashefski, & Doershuk, 1987). Indeed, the prevalence rate of SA disorders in adults with disabilities is thought to be as much as twice that in the general population (Beitchman, Wilson, Douglas, Young, & Adlaf, 2001; Center for Substance Abuse Treatment, 1999). Given their greater rates of substance use and abuse, PWDs 4 Corresponding author. Oregon Health and Science University, P.O. Box 574, Portland, OR 97207, USA. Tel.: +1 503 494 8364; fax: +1 503 494 6868. E-mail address: [email protected] (G. Krahn). 0740-5472/06/$ – see front matter D 2006 Published by Elsevier Inc. doi:10.1016/j.jsat.2006.05.011

could be expected to use SA treatment services at increased rates. However, previous studies on SA treatment have demonstrated lower treatment utilization rates in this population (De Miranda & Cherry, 1989; Helwig & Holicky, 1994; Kirubakaran, Kumar, Powell, & Tyler, 1986; Schaschl & Straw, 1989). In a prior population-based cross-sectional study, we examined access, utilization, and outcome rates in publicly funded outpatient alcohol and drug treatment programs. This study included the three largest Medicaid-eligible groups in Oregon: disability, aid to families with dependent children/temporary assistance to needy families (AFDC/ TANF), and expansion, which is a newly eligible group under a Federal Section 115 waiver, within the Oregon Health Plan. Medicaid guidelines do contain additional subgroups (e.g., Medicare, poverty); however, because most enrollees (95%) are incorporated within these three eligibility groups, investigations were limited to them. Findings showed that rates of treatment access (defined as eligible adults admitted to any form of publicly funded SA treatment

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Fig. 1. The BMVP (Gelberg et al., 2000). Traditional domains: demographics, health beliefs, social structure, personal/family resources, community resources, perceived health, evaluated health, personal health practices, use of health care, health status, and satisfaction with care. Vulnerable domains: social structure, sexual orientation, childhood characteristics, personal/family resources, community resources, perceived health, evaluated health, and personal health practices. *Health behaviors refer to personal health practices and use of health services.

regardless of modality or length of stay) for PWDs were consistently approximately half those for the other two subpopulations over the study period (1992–1998); that is, Medicaid enrollees with disability codes were approximately half as likely as other Medicaid participants to enter SA treatment programs during any 1 year. Furthermore, the findings indicated that adults with disabilities in SA treatment generally fared as well and benefited as much from SA treatment as did other Medicaid subpopulations (Krahn, Deck, Gabriel, & Bersani, 2000). These findings suggested that adults with disabilities encounter major obstacles when needing to access SA services and treatment programs. The purposes of this mixed methods study were to extend this previous research and to examine potential explanations for the apparent disparity in treatment access. This exploratory multiphase study was designed to generate hypotheses for future empirical research and to identify areas of needed policy development. The study solicited information from key state agencies, examined demographic data on SA enrollees across Medicaid subgroups, and analyzed referral sources of persons currently undergoing SA treatment. Interviews with local treatment providers and PWDs obtained multiple perspectives on barriers to SA treatment that might account for reduced access rates for PWDs.

composed of traditional and vulnerable domains in each of the predisposing, enabling, need, and health behavior constructs. It was anticipated that use of the BMVP for other vulnerable populations, including PWDs, would yield unique characteristics predicting health service utilization. This study used the BMVP as a framework for directing investigative attention and summarizing specific challenges faced by PWDs in accessing SA treatment (Fig. 1). This study addressed five questions relevant to identifying reasons for the lower rates of treatment access and utilization in SA by adults with disabilities:

1.1. Theoretical framework for health service utilization

Because of the exploratory nature of this study, we used both quantitative and qualitative research methodologies for data collection and analysis (Creswell, 2002). Statistical significance is not reported throughout this study. The large sample sizes attained in multiyear statewide data sets (Phases I and III) result in overpowered analyses in which even the smallest differences are statistically significant at conventional levels. The internal review board of the Oregon Health & Science University approved and provided oversight for this study.

The behavioral model of Andersen (1968) is a conceptual model developed to aid in understanding and predicting the use of health services and health behavior. Initially developed in 1968, the behavioral model assumes that health care utilization requires that (1) a person be predisposed to receive health care, (2) enabling conditions that allow the person to attain health services exist, and (3) the person perceives a need for these services. It addresses personal and population characteristics separated into predisposing, enabling, need, and health behavior factors. To frame this study, we used the variation of Andersen’s model, known as the Behavioral Model for Vulnerable Populations (BMVP; Gelberg, Andersen, & Leake, 2000). Developed for the homeless population, the BMVP is

1.

What are the differences in sex, age, and ethnicity between disability, AFDC/TANF, and expansion subpopulations? 2. What issues do key state agencies believe to be relevant for PWDs accessing SA treatment? 3. Who refers adults with disabilities to SA treatment programs and how do the referral patterns compare with those for the AFDC/TANF and expansion subpopulations? 4. What do PWDs perceive as the reasons why PWDs access drug and alcohol treatment at such reduced rates? 5. What do SA treatment providers perceive as the reasons for reduced access to SA treatment by PWDs?

2. Phase I—Demographic comparisons This phase of the study addressed the first research question and examined core demographic variables for

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potential differences among the Medicaid subgroups currently in SA treatment.

Table 1 Characteristics of treatment participants in Oregon for the years 1992–1998 (unduplicated)

2.1. Materials and methods The data for this analysis were drawn from two databases for the period of January 1992 through July 1998: the Client Process Monitoring System (CPMS) managed by Oregon’s Office of Mental Health and Addiction Services and the administrative data set on Medicaid eligibility and enrollment from Oregon’s Office of Medical Assistance Programs. The CPMS is a utilization reporting system that includes information on all publicly funded SA treatments and treatment users. Each record in the CPMS represents an episode of care that includes client characteristics, an admission date, a discharge date, and the modality of service. The Medicaid database provided identification of the population of PWDs through eligibility codes (including disability codes) and enrollment records for all recipients. Linking the CPMS and Medicaid databases verified each member’s eligibility category and enrollment status within the first 30 days of each treatment episode. These data sets have been examined previously to identify significant differences in SA treatment access (Deck, McFarland, Titus, Laws, & Gabriel, 2000). We analyzed them further for basic population demographic data during the first quantitative research phase.

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Characteristics Gender (%) Male Female Age at intake (years; %) 18–25 26–35 36–45 46–55 56–64 Race/ethnicity (%) White Black Hispanic Native American Asian/Pacific Islander

Disability group (n = 4,568)

AFDC/TANF group (n = 13,806)

Expansion group (n = 36,473)

59.1 40.9

21.5 78.5

67.9 32.1

11.7 30.9 35.6 15.3 6.4

29.5 47.4 21.0 2.0 0.1

21.4 36.6 30.7 9.8 1.5

80.9 9.5 2.7 5.9 1.0

82.5 6.1 4.1 6.9 0.5

83 5.7 4.4 5.3 0.6

expansion groups were males, whereas only 21.5% of the AFDC/TANF group subjects were males. Race within subgroups was comparable with the general population of Oregon and consisted primarily of White enrollees for the disability, AFDC/TANF, and expansion groups, with a higher percentage of Blacks and a lower percentage of Hispanics in the subgroup of PWDs comparatively.

2.2. Participants 2.4. Model variables Phase I included a total target population analysis. This population included all Medicaid-eligible adults in publicly funded SA treatments in Oregon aged between 18 and 64 years, excluding those dually eligible for Medicare and Medicaid. Annual enrollment within the CPMS and Medicaid databases varied across the years, with the total number of unique participants (N = 54,847) during the study period being 4,568 disabled clients, 13,806 AFDC/TANF clients, and 36,473 expansion clients. Standard quality control procedures were implemented for case definition and data linkages. Descriptive analyses were accomplished using SPSS v11.0 statistical software. 2.3. Results Phase I found that characteristics for PWDs in treatment differed from those for the AFDC/TANF and expansion groups in several ways (Table 1). The disability group contained fewer persons in the age range of 18–26 years as well as higher proportions of individuals in the age range of 46–55 years as compared with the AFDC/TANF and expansion groups. Most PWDs were in the age range of 26–45 years, similar to the AFDC/TANF and expansion groups. Gender disparities were also noted among subgroups. More than half the subjects in the disability and

Phase I confirmed the variables of age, sex, and ethnicity to be important demographic factors, categorized under the predisposing traditional domain of the BMVP. These biologic and individual characteristics reflect differences from other Medicaid-eligible groups and may help contribute to the likelihood that PWDs will access SA treatment services.

3. Phase II—Examination of agency perspectives This phase of the study solicited the perspectives of state agency representatives who had an overall systemic perspective on disability and SA treatment services to help determine additional directions to investigate. 3.1. Participants Purposive sampling was used to identify focus group participants composed of key managers from the Drug and Alcohol Treatment Office, the service agency for mental health and developmental disabilities, the state client data set, and a provider from the chemical dependence treatment community. A subsequent interview was held with a

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representative from the state vocational rehabilitation (VR) program.

services characteristics were categorized under health behavior and were pursued further in Phase V.

3.2. Materials and methods 4. Phase III—Referral sources The investigators of the initial population-based treatment study met in July 2000 with the four Oregon state agency representatives. The research investigators presented in some detail the earlier findings of decreased treatment access and utilization as well as comparable treatment outcomes across four outcome measures (treatment retention, treatment completion, readmission, and abstinence from primary drug of choice) for Medicaid enrollees with disability codes as compared with AFDC/TANF and expansion subgroups. Agency representatives engaged in comprehensive discussions about the perceived reasons for these findings and their potential implications. Discussions were recorded as field notes and summarized for directions for further investigation.

Investigation of SA treatment referral sources and patterns addressed the second research question and provided additional insight into the process of how PWDs with SA problems come into SA treatment. 4.1. Materials and methods Referral source information was contained in the CPMS and was analyzed using a methodology analogous to that used in Phase I. The CPMS identified data on referral sources that were categorized as (1) SA and mental health treatment, (2) social and legal services, (3) hospital/ medical, (4) school/education, (5) self/family/employer, and (6) other.

3.3. Results

4.2. Participants

The resulting discussion and summarization of state agency feedback identified three potential explanations for decreased utilization of SA treatment by PWDs. First, participants speculated that treatment programs did not have the resources and incentives to make needed accommodations to encourage PWDs to participate in treatment. They hypothesized that programs were already working beyond capacity and might not have accessible facilities or personnel who were accustomed to working with PWDs. This potential explanation was examined in the final phase of interviews with treatment providers. Second, the agency representatives speculated that referral sources to treatment might differ and recommended that they be investigated for different patterns across subgroups of Medicaid enrollees. This possible difference in referral sources was pursued in Phase III. Finally, agency representatives suggested that the policies and practices of VR services might lead to possible disincentives. This was investigated through a subsequent interview with a VR representative. The VR administrator acknowledged that, although it was not a current policy of the agency to withhold services for persons with active chemical dependence, unofficial practices of select counselors may have led to the delay of VR services to persons who continued to experience substance addiction and to nonreferral of active VR enrollees to SA treatment.

Referral source data for all subgroups were obtained through examination of the CPMS data set. This information is recorded at the time of admission into SA treatment. The population included all Medicaid-eligible adults in Oregon aged between 18 and 64 years, excluding adults dually eligible for Medicare and Medicaid.

3.4. Model variables These observations were fit into the BMVP in several places. The policies and practices of VR were fit as enabling/vulnerable variables under community resources, as was insufficient availability of SA treatment. Treatment

4.3. Results Examination of referral patterns to SA treatment indicated somewhat different patterns across subgroups (Table 2). Variations in referral sources likely result from the different characteristics of the subpopulations and their respective life circumstances. The primary referral sources for AFDC/TANF were social services, legal services, and self-/family/employer referrals. For the newly eligible expansion subgroup, referral sources included social services, legal services, and self-/family/employer referrals as well. The most common referral sources for PWDs were self-/family/employer referrals, legal services, and mental

Table 2 Referral patterns to SA treatment across subgroups Referral source

PWDs (%)

AFDC/TANF group (%)

Expansion group (%)

Social services Legal Self/Family/Employer Mental health treatment Hospital/Medical Substance treatment School/Education Other sources

9.1 26.0 30.7 15.2 4.5 10.7 0.2 3.6

38.5 26.1 20.6 3.0 2.0 7.2 0.5 2.1

8.1 46.5 28.6 3.1 2.6 7.9 0.1 3.1

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health treatment services. Annual referral patterns for PWDs across individual years reflect similar patterns. In general, PWDs came into treatment through self-referral or through the referral of their family members. Persons with disabilities were also three times more likely to have referrals from mental health agencies than the AFDC/TANF and expansion groups, likely reflecting a higher rate of mental health concerns for PWDs. Social services only accounted for 9.1% of the referral sources of PWDs, significantly lower than the rate of the AFDC/TANF subgroup. These results suggest that PWDs have less contact with social service agencies or that social service personnel do not recognize the need for SA treatment among PWDs as frequently as they do for the AFDC/TANF subpopulation. Hospital and medical referrals were low for all groups. This is not surprising as routine screening for alcohol and other drugs has been described as having blittle clinical importanceQ in primary care and trauma medicine practice (Rivara, Dunn, & Simpson, 2000) and primary care physicians report not screening for SA routinely, particularly among patients with physical disabilities (Krahn, 2003). 4.4. Model variables Referral sources relate to general service availability, the connection of PWDs to services, and awareness of service providers of potential SA problems in PWDs. The findings from referral source analysis are suggestive rather than definitive. They however suggest that PWDs are less connected with social service agencies as compared with other Medicaid subpopulations and that social service providers are less aware of SA in PWDs as well as less likely to refer PWDs to treatment. Reports in the interviews with PWDs (Phase IV) support this interpretation. Under enabling/vulnerable variables, we include information about services and links with social services under personal/family resources and social service providers’ lack of awareness of SA in PWDs under community resources. To our knowledge, treatment referral source characteristics have not been analyzed or addressed in previous literature in relation to PWDs with SA problems.

5. Phase IV—Perceptions of PWDs The perceptions of PWDs were solicited to capture the unique insights that potential treatment users may have regarding barriers that they might have experienced or know about when considering SA treatment. 5.1. Participants Phase IV participants were a self-selected sample of adults with disabilities recruited through independent living centers and VR counselors. Interviewees were compensated with $25.00 for their participation. Eleven individuals were

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recruited based on the selection criteria of (1) having a disability and (2) having an SA problem or knowing a PWD with SA problems. The sample consisted of 5 males and 6 females. Eight of the 11 interviewees related their own experience about living with both disability and addiction, whereas 3 participants recalled situations involving acquaintances with a disability and SA problems. Self-reported disabling conditions included visual impairment, spinal cord injury, mental illness, cerebral palsy, speech impairment, arthritis, and neuropathy. 5.2. Materials and methods Interviewers conducted semistructured interviews between February and March 2002 in respondents’ homes or community settings selected by the respondents (e.g., neighborhood coffee shop). Interviewers followed internal review board protocol and explained all processes before obtaining signed consent from the interviewees. Interview time averaged 30–40 minutes and included six questions with optional follow-up probes. Interview questions were worded broadly so that respondents could construct individual interpretations for subjective reporting. Specific questions included the following: 1.

2. 3.

4. 5.

6.

bDo you know anyone with a disability who has had a problem with drugs or alcohol? This could be you or a family member or a friend or neighbor.Q bFrom what you know, what makes it hard for a PWD to get SA treatment?Q bWhat do you think would keep a person with a disability who has a problem with drugs or alcohol from looking for treatment?Q bFrom what you know, how effective do you think drug and alcohol treatment is for PWDs?Q bWhen we look at publicly funded treatment, PWDs are in treatment only about half as often as other people—why do you think that is?Q bAnything else you would like to add?Q

Interviewers took detailed field notes during the interviews and subsequently summarized them for analysis of recurring themes. To reduce interviewer bias, a second reviewer independently summarized field notes across questions for thematic content. 5.3. Results Responses were grouped into categories and then regrouped into themes that reflect domains of the BMVP. These included references to the psychological resources of PWDs, family and community contexts, perceptions of the treatment program and providers, and resistance among PWDs to participate in SA treatment. Participants made numerous references to the psychological resources of PWDs, reporting that PWDs with SA

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Table 3 Behavioral Model for Vulnerable Population—PWD with substance abuse Predisposing factors

Social structure: ethnicity, education, employment, social networks, occupation, family size, religion

Need for care factors

Personal/family resources: regular source of care, insurance social support, competing needs, perceived barriers to care Community resources: residence, religion, health services resources (e.g., policy barriers)

Perceived health: general population health conditions

Personal/family resources: information about services, links to social services, family support for SA

Perceived health: increased SA in PWD, SA treatment seen as ineffective, increased pain, SA not recognized, enabling attitudes

Community resources: VR policies/ practices, insufficient SA treatment available, unaware of SA in PWD, transportation, no services available, cost of treatment, unable to qualify for publicly funded services, inaccessible clean and sober housing, poor care coordination across agencies

Evaluated health: SA providers unaware of SA in PWD

Evaluated health: general population health conditions

Health behavior and health services factors Personal health practices: diet, exercise, self-care, tobacco use, adherence to care Use of health care: ambulatory care, inpatient care, alternative healthcare, long-term care

Health beliefs: values concerning health & illness, attitudes toward health services, knowledge about disease Vulnerable domain Adult characteristics: stigmatization/victimization, limited mobility, psychological resources (low self-efficacy), (low self-esteem), (false bravado), lack of social skills, isolation

Personal health practices: perceived health practices Treatment services characteristics: negative attitudes of staff, unskilled staff/staff training, inaccessible facilities, inaccessible equipment/materials, no peer counseling, no personal assistants, few special needs managers, limited outreach, lack of follow-up care, programs disallow psychoactive drugs, insufficient MH care Inadequate reimbursement: personal aides, case management, individualized care, special services

Health outcomes Traditional/vulnerable domains Health status: perceived health, evaluated health Satisfaction with care: general satisfaction, technical quality, interpersonal aspects, coordination, communication, financial aspects, time spent with clinician, access/availability/convenience, continuity, comprehensiveness, administrative hassle

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Traditional domain Demographics: age, gender, marital status, veteran status

Enabling or impeding factors

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problems experience low self-efficacy and low self-esteem, that they may lack confidence or demonstrate a bfalse bravadoQ (e.g., bI can stop my addiction on my own.Q). A number of references were made to stigmatization or victimization relating directly to their disability that could be regarded as a predisposing variable. The physical characteristic of limited mobility was described as a potential barrier to treatment for some PWDs. A recurring theme was a negative attitude toward SA treatment expressed by PWDs. These responses described mistrust of the treatment system, perceived stigmatization and victimization by the SA treatment system, and the belief that the stigma of disability impedes treatment success. There were mixed opinions about the relative effectiveness of SA treatment for PWDs. Some respondents described caregivers or family members as not believing that SA treatment would be effective for PWDs. Other respondents reported that treatment success for PWDs depends on how well individuals have dealt with their disability, the desire of individuals to treat themselves, and the quality of the treatment program. Family or community contexts were reported as hindering access to treatment. These included references to having little family support or having competing needs for family time and resources. Others related to inadequate resources of the community in which they lived. Treatment was seen as difficult because of lack of available services and as costprohibitive because individuals were unable to qualify for publicly funded services owing to their income level. Respondents described inadequate community resources related to transportation, including problems with the walking distance to public transportation and lack of transportation through family or friends to get to treatment. A number of responses indicated that SA in PWDs was not recognized as a problem that could or should be treated. Some participants reported that PWDs and their caregivers or family members focused on the disability rather than on SA. Participants reported that PWDs were coddled by others, were self-medicating as a result of their physical and emotional pain, or were supported in their addiction by a personal assistant who might also have an addiction. Others described feeling that PWDs with SA problems were unaware of their options and lacked information about services. In contrast, some interviewees believed that it was easier for PWDs to access SA treatment because of connections with a social services network and receipt of public benefits. Another group of responses related to problems with treatment programs themselves. Some barriers related to the staff of treatment programs. A frequent response described a generally negative attitude held by SA treatment providers toward PWDs. One participant described treatment providers to be bpicking on youQ and bpersecuting youQ; another noted that the small number of PWDs enrolled in treatment led to a lack of understanding and support by staff members. There were comments on the lack of counselor training specific to disability. Inaccessibility of the program and its facilities was cited as a barrier in a number of ways. Comments included a

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lack of dual-diagnosis services to treat the combination of disability and SA, inability to treat multiple disabilities, lack of physical (wheelchair) accessibility, unavailability of accessible equipment/materials for persons with sensory impairments (e.g., interpretation for persons who were deaf, talking books, Brailled information for persons who were blind), lack of peer counseling (i.e., PWDs who are recovering as addicted individuals), and lack of funding for personal assistants. 5.4. Model variables The perceptions of participating PWDs were fit into the BMVP in several ways (Table 3). For predisposing/vulnerable characteristics, variables include victimization and stigmatization, limited physical mobility, and psychological resources (low self-efficacy, low self-esteem, false bravado). A number of variables are included in the enabling or impeding factors. Under enabling/traditional variables, they are personal/family resources of general social support and competing family needs. Under enabling/vulnerable variables, issues specific to PWDs with SA problems include family support for SA treatment, social service personnel being unaware of SA in PWDs, and financial barriers to treatment participation (cost of treatment, unable to qualify for publicly funded treatment). Under perceived need/ vulnerable variables, we include PWDs and their families being unaware of SA problems and negative attitudes toward SA treatment, an enabling attitude by social service personnel of increased tolerance and unrecognized need. Under health behavior and services/vulnerable variables, we fit variables relating to treatment services characteristics (negative attitude of providers, unskilled providers to address PWDs with SA problems, inaccessible facilities and materials, lack of peer counseling for PWDs with SA problems, lack of funding for personal assistants).

6. Phase V—Perceptions of treatment providers This phase was conducted to determine the perceptions of SA treatment providers about the inclusion of PWDs in their treatment programs. Phase II provided direction for the interview protocol, including questions about treatment program characteristics, treatment providers’ experience in providing services to PWDs, and treatment providers’ perception of treatment outcomes and barriers relating to PWDs. Semistructured key informant interviews were conducted to determine the perceptions of PWDs and treatment providers about SA treatment access and utilization by PWDs. 6.1. Participants Phase V participants were specifically selected from among all SA treatment programs in Oregon that accepted

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publicly funded clientele. Participants were selected to vary along the dimensions of program size, location (urban or rural), and degree to which they were known for including persons with multiple diagnoses. Thirteen representatives from programs that provided a range of services were interviewed. The proportion of PWDs covered by these services ranged from 2% to 10%, with most reporting that approximately 5% of their Medicaid clientele experienced disabilities. 6.2. Materials and methods Primary data collection consisted of telephone interviews with the program administrator most knowledgeable about the nature of a program. The interview was conducted by a researcher with an established relationship with the SA treatment provider network. The protocol was based on the following core questions: 1. 2.

3. 4. 5. 6.

bPlease describe your program.Q bTo what extent do the clients you serve have physical disabilities? vision or hearing problems? mental health concerns? cognitive or learning problems?Q bAre there unique needs or barriers to providing treatment to PWDs?Q bAre there barriers to getting people into treatment?Q bAre there barriers to follow-up?Q bHow effective is treatment for PWDs overall?Q

Responses were recorded as field notes and summarized. 6.3. Results All programs reported serving clients with mental health problems (anxiety, depression, and posttraumatic stress disorder), and many had some experience working with persons with cognitive disabilities. However, programs reported limited experience working with persons with physical disabilities, and most had little experience in serving clients with hearing loss and/or vision loss. These findings confirm earlier reports that treatment programs are not serving many PWDs for SA apart from persons with mental health concerns. The providers’ perceptions described a number of barriers previously described by PWDs. These included psychological resources of PWDs (lack of self-acceptance and/or social skill, fearfulness, sense of isolation, and reluctance to seek help). They described PWDs in treatment as frequently feeling overwhelmed by conversation and participation with treatment providers. At times, these characteristics were described in stigmatizing terms as PWDs bnot fitting inQ and btypically unsuccessful in SA treatment,Q reflecting what has been described as a negative attitude by treatment staff. Providers also described PWDs as often lacking support from family, friends, and peers to

attend group meetings. Treatment providers reported that without such support, PWDs with mental health concerns often do not function productively in groups. Treatment program barriers included lack of physical accommodations (e.g., wheelchair inaccessibility), lack of follow-up care, poor coordination with other services, and insufficient staff training on disabilities. Treatment providers also described inattention to special needs of PWDs in treatment, lack of special needs caseworkers, and low levels of outreach to PWDs. Mental health services were reported as more effective when dual diagnosis was included in the treatment program. An area of specific vulnerability for PWDs in SA treatment relates to the use of psychoactive drugs. Treatment providers described that some programs have policies prohibiting prescription drug use although these drugs may be regarded as medically necessary. Inadequate management of psychiatric concerns was frequently cited as a barrier to SA treatment for persons with dual diagnoses. Community barriers included the lack of clean and sober accessible housing needed for successful treatment and prevention of relapse. Funding barriers that specifically related to reimbursement in managed health care plans were described. These included that PWDs require more individualized care, increased treatment costs, and specialized services (e.g., transportation) that are not reimbursed by managed care plans. To better identify various disabilities, the providers suggested redesigning and upgrading the assessment process at intake. A higher rate of case management was described as necessary to address the special needs of PWDs in SA treatment. On the community level, the providers believed that services for PWDs should be centered in one location. Recommendations included the building of community advocacy and an increase in interagency collaboration. 6.4. Model variables Providers’ perceptions affirmed such predisposing/vulnerable variables for PWDs with SA problems as psychological resources, stigmatization, added isolation, and lack of social skills. Also affirmed under enabling/traditional variables were family support and public transportation; under enabling/vulnerable variables, lack of peer support for PWDs with SA issues. Provider interviews added variables in the enabling/ vulnerable domain. Under community resources, these included lack of interagency service coordination and accessible clean and sober housing. A number of variables were affirmed or added under the health services/vulnerable category of treatment services characteristics that addressed staff knowledge and attitude (negative attitude of staff, unskilled providers/lack of staff training), programmatic inadequacies (limited outreach, lack of follow-up care, few special needs managers, insufficient mental health care),

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policy barriers (programs disallow psychoactive drugs), and financial reimbursement barriers (personal assistants, increased case management, individualized care, and special services).

7. Discussion This study sought to explore the potential reasons for the lower rate of SA treatment access by PWDs as compared with other Medicaid subpopulations. The multiple perspective approach of this study identified numerous potential barriers to treatment.

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treatment in as timely a manner as do other Medicaid subgroups. Variations in individual characteristics, referral patterns, and treatment barriers were all evident. Specific vulnerabilities and barriers of PWDs included lack of support from their social environment, lack of accommodations by treatment centers, agency limitations, inadequate reimbursement rates, dual-diagnosis demands, policies regarding psychoactive drug use, and stigmatization by clinicians and agency personnel. These findings are only suggestive. Future research is needed to determine whether the barriers identified in this study actually reduce treatment access and whether intervening to eliminate these barriers would result in increases in SA treatment access and utilization by PWDs.

7.1. Study limitations 7.3. Value of the BMVP This study has a number of limitations to be noted. First, this study was limited to Medicaid-eligible persons who used state-sponsored SA services in Oregon. Policies and practices in other states or in privately funded treatment programs may differ from those examined in this study. Second, the study relied on reports from small samples of PWDs and SA treatment providers—additional barriers would likely be identified with larger samples. Issues of selection bias through self-report measures and noncomparable criteria for respondent enrollment arise with this fundamentally interpretive study design. Observation bias (recall and interview bias) is also possible owing to the methodology of Phases II, IV, and V. Selection bias within Phase V is however unlikely owing to the widely encompassing nature of the selected service respondents. Potential bias is impossible to quantify in this study, and the existence of such measurement error cannot be discounted. 7.2. Study findings In 1999, the Center for Substance Abuse Treatment of the Substance Abuse and Mental Health Services Administration published a best-practice guide in which it exhorted treatment professionals to examine their programs to eliminate barriers (attitudinal, communicative, architectural, and discriminatory policies to treatment for PWDs), to train staff to understand functional limitations as well as the need to accommodate those who cannot adapt to treatment, and to determine beneficial integration of PWDs into existing treatment services as well as identify when specialized services may be needed. This study’s findings are congruent with those general guidelines and provide additional specific information about potential barriers. Despite the study’s limitations, its findings support the idea that the demographics of PWDs in need of SA treatment differ from those of persons without disabilities. Persons with disabilities appear generally older than those without disabilities, providing further support for the belief that barriers to treatment prevent PWDs from accessing

The BMVP (Gelberg, Andersen, & Leake, 2000) provided a valuable framework for summarizing the findings and conceptualizing directions for future research (Table 3). One point of conceptual difference should be noted: although we used the established categories of the BMVP and grouped the characteristics related to the disability under predisposing variables, a social construction perspective to disability would maintain that stigmatization and even impairment in mobility result from societal and architectural constraints (Altman, 2001) and are not individual predisposing characteristics. From a social construction perspective, characteristics relating to the disability would be categorized under enabling/impeding or need domains. 7.4. Study implications toward policy and practice These findings concerning access barriers to SA treatment for PWDs have practical applications. Interventions to address disparities in treatment access will need to coordinate across multiple communities to address the numerous barriers. Vocational rehabilitation counselors and social service case managers will need to recognize and address SA in their clientele and increase referral to treatment. Treatment programs will need to address the negative attitudes of their staff and improve accessibility of their facilities, policies, and materials. Substance abuse treatment professionals must pay close attention to the unique aspects of the lifestyle of PWDs, which may affect the outcomes of SA treatment. If treatment providers, policymakers, and health services researchers want to understand the root causes of health service underutilization by vulnerable populations, they need not look beyond the organization and delivery of health service itself (Rosenbaum & Zuvekas, 2000). Provider sensitivity to treatment barriers (political, attitudinal, or physical) is crucial while devising evaluations and individual treatment plans. Leaders in the disability community have a role to play in informing their members about SA and treatment,

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advocating for clean and sober accessible housing, and supporting training for PWDs and personal assistants to recognize and address SA. 7.5. Future research This study’s findings are suggestive of deterrents to SA treatment access by PWDs but are not definitive about barriers or how best to address them. Future research needs to use larger samples and expanded geography to increase generalizability to other populations. Intervention studies that focus on removing barriers and determining whether access to treatment increases are needed. Further research could examine potential differences in treatment access and success for different disability subgroups (e.g., mental health, physical impairment, intellectual disabilities). Regression modeling would also help predict not only dichotomous variables (received/did not receive treatment) but also continuous outcomes (length of treatment stay), as well as identify outlying PWDs requiring special treatment services. Finally, there is a need to understand more fully the characteristics of SA treatment centers that predict treatment outcomes and the barriers that prevent PWDs from accessing such centers. With this study, we generated a number of tentative conclusions that require future empirical confirmation through randomized controlled studies or epidemiological research to examine treatment outcomes, service utilization, referral patterns, and overall satisfaction. From a policy perspective, significant study findings elucidate prospective participants with disabilities in a heightened need for treatment services as compared with persons without disabilities (accessing at half the rate but with more than twice the rate of SA problems). This suggests that policies and practices that impede treatment access among PWDs will need careful study to determine what is preventing or hampering utilization.

Acknowledgments This study was supported through Substance Abuse and Mental Health Services Administration Cooperative Agreements 1 UR7TI1129401 and 4 KD1 TI12045031; National Institute on Drug Abuse Grant No. RO1 DA11970; and National Institute on Disability and Rehabilitation Research Grant No. H133B990019.

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