BSAS Principles of Care establish equitable treatment, responsive to the abilities and needs of the individual, as fundamental to substance abuse treatment. For persons with disabilities, these principles mean more than prohibiting discrimination and removing physical barriers to entry and navigation of facilities. Rather, they call for broad efforts to ensure that programs effectively reach, engage and serve persons with disabilities, efforts that are fully integrated into all agency programs and operations. This Practice Guidance addresses these efforts and the role of the Access Coordinator as practice leader in carrying these out.
Research documents high rates of substance use disorders (SUD’s) among persons with disabilities1, ranging from 14% among persons with developmental disabilities to 50% among persons with traumatic disabilitiesi, compared to 8.7% prevalence of SUD’s among the general population2. Tobacco use rates are also high: in Massachusetts 24% of persons with disabilities smoke, compared to 17% of the general population. Excluded from these statistics are persons with disabilities who either have not been identified or assessed or who have not been reached by surveys omitting adaptive technology. SAMHSA estimates that 50% of persons with a substance use disorder and co-existing disability are not identified as such.3 These factors can be catalysts of each other: substance abuse increases risk of injury and disability, and disabilities increase risk of substance use.
Persons with disabilities are likely to report both poor health and difficulty in accessing health care.4 Care for substance use disorders is no exception. In a series of studiesii of access to treatment, as many as 8 out of 10 persons with disabilities who needed substance abuse treatment were unable to access it; and of the 431 treatment centers surveyed in the study year, only 5% of clients had an identified disability.
Improvements in rates of identification and treatment for persons with disabilities are important indicators of success in providing equitable, individualized care. An active, clearly visible Access Coordinator is critical in achieving this success. BSAS policy5 defines the Access Coordinator as a member of senior management, that is, serving in a leadership role. In addition to identifying barriers and needed accommodation required, the Access Coordinator:
Participates in programmatic, operational and fiscal decisions;
Is knowledgeable about the agency’s clinical programs and administrative operations;
Identifies accommodations needed in policies, programs, procedures and methods of communication;
Responds to complaints and oversees grievances procedures, and
Promotes staff development.
In other words, an active, knowledgeable and committed Access Coordinator is essential to equitable services for persons with disabilities.
Benefits the individual receives (or may be eligible for).
Staff discuss meaning of disabilities with individuals, including:
Whether and to what degree the individual views the disability as a limitation;
Strengths demonstrated in coping with disability, including resources available from family, friends and community;
Losses related to disability, such as functional, life experience, health losses.
Staff consult with the individual and Access Coordinator to determine need for accommodations for full integration in treatment programming.
Treatment plans describe
The disability and accommodations needed so that the individual can participate fully in treatment;
The individual’s preferences in relation to accommodations.
Treatment plans describe referrals needed when an assessment indicates possibility of a disability, and record other care providers and plan for care coordination.
Services are adapted to individual capacities so individuals participate in an integrated way.
Education Individuals are:
Educated about risks related to substance abuse that are specific to persons with disabilities.
Provided information about community resources for persons with disabilities.
Transition and Aftercare:
Persons with disabilities are linked to ongoing supports such as Independent Living Centers, advocacy groups and primary health care.
Programs can assess their effectiveness by including specific queries in their data analysis, and by maintaining information about the community served. Some examples of these related to serving persons with disabilities include:
Persons with disabilities participate in design and implementation of these assessments.
Management periodically assess program requirements to identify those which constitute (or might constitute) barriers, e.g. requirements for reading, for length of groups, or for performing chores; or aspects of the physical environment such as noise, lighting.
Periodic, scheduled review of records where secondary diagnoses are recorded or where there is indication of undiagnosed disability.
Periodic surveys of staff and individuals served.
Collecting and comparing demographic data with treatment population, including information on health disparities in community served.
Comparing outcomes or length of stay with characteristics identified in assessment, such as identified disability or special education history.
Tracking identification of disabilities in assessment and follow up.
Tracking use of assistance such as screen readers, American Sign Language (ASL) interpreters and Communication Access Realtime Translation (CART).
DPH and BSAS:
Bureau of Substance Abuse Services Policy on Access for Individuals with Disabilities: Describes the authority and rationale, and details policy requirements.
BSAS and Massachusetts Commission for the Deaf and Hard of Hearing partnership: A joint effort by BSAs and MCDHH to provide ASL and Communication Access Realtime Translation (CART) services for treatment programs and self-help groups (listed on website).
DPH Office of Health Equity: Provides information and links to a range of resources and services related to health equity and health disparities, including links to Culturally and Linguistically Appropriate Services resources which include models for data collection and surveys.
DPH Healthy Aging and Disability Unitencompasses the Office of Healthy Aging and the Office on Health and Disability. The unit promotes the health and well being of older adults and people with disabilities across the lifespan in Massachusetts. The ADA Checklist, tools for assessing accessibility, and sample policies are available at the HADU website (http://www.mass.gov/dph/healthyaging)
Department of Disability Services, Adult Services, provides services for adults with intellectual disabilities. The website includes descriptions of services as well as links to resources for individuals and their families.
Massachusetts Commission for the Blind provides an array of services for blind individuals.
Massachusetts Commission for the Deaf and Hard of Hearing provides specialized services for individuals, as well as advocacy and technical assistance.
Massachusetts Rehabilitation Commissionresponsible for Vocational Rehabilitation Services, Community Services, and eligibility determination for the Social Security Disability Insurance (SSDI) and the Supplemental Security Income (SSI) federal benefits programs
Independent Living Programs and Services: information and links to services supporting independent living, including a list of Independent Living Centers, private, nonprofit, consumer-controlled, community-based organizations providing services and advocacy by and for persons with all types of disabilities.
Information and Technical Assistance Home Page: a central link to an array of resources and information
2010 Standards for Accessible Design: Department of Justice regulations and guidelines on accessible design
ADA Best Practices Tool Kit for State and Local Governments: Contains helpful information about the role and responsibilities of the Access Coordinator
TIP 29: Substance Use Disorder Treatment for Persons with Physical and Cognitive Disabilities: http://www.ncbi.nlm.nih.gov/books/NBK14408/
Office of Disability Employment Policy, US Department of Labor: http://www.dol.gov/odep/ Resources and information on building a diverse work force including job descriptions (see: Office of Disability Employment), accommodations, etc.
Centers for Disease Control accessibility page provides resources and information on disability, health, accommodation, design and statistics.
National Institute on Disability and Rehabilitation Research (NIDRR): and office of the US Department of Education, NIDRR supports applied research, training and development to improve the lives of individuals with disabilities.
United States Access Board links page provides information about and links to resources for assistive devices, disability associations (advocacy and self-help), standards, and research.
Information about Assistive Devices: National Institutes of Health, MEDLine Plus
Census: American Community Surveys: to assess community composition, get data by zip code on right hand column link http://www.census.gov/acs/www/
World Health Organization: http://www.who.int/topics/disabilities/en/ Resources on classifications of disabilities, ‘e-accessibility’, assistive devices, etc.
ADA National Network: A national website and network of 10 regional centers established by the National Institute on Disability and Rehabilitation Research (NIDRR), the network provides information, training (web training, usually free) and guidance.
WINDMILLS ATTITUDINAL TRAINING: Attitudinal training program developed by the California Governor’s Committee for Employment of Disabled Persons. http://www.miltwright.com/products/windmills.htm
1 TIP 29 Substance Use Disorder Treatment for Persons with Physical and Cognitive Disabilities
2 National Survey of Drug Use and Health 2010
3 TIP 29 Substance Use Disorder Treatment for Persons with Physical and Cognitive Disabilities
4 Disparities and Disabilities: Another View of a Health Care Issue (2009) Disability Policy Consortium, Inc.
5 Access for Individuals with Disabilities: The Bureau of Substance Abuse Services Policy. Access coordinator role are also defined in federal statute and regulation (see ada.gov) and BSAS regulation.
6 For resources describing disability culture, see Steven E. Brown. What Is Disability Culture? Disability Studies Quarterly. Spring 2002 Institute on Disability Culture; and Gary Eddey et al. Considering the culture of disability in cultural competency education. Academic Medicine, Vol. 80, No. 7 / July 2005. And see the Massachusetts Commission for the Deaf and Hard of Hearing Understanding Deaf Culture site.
i West, S.L., The accessibility of substance abuse treatment facilities in the United States for persons with disabilities. Journal of Substance Abuse Treatment 33 (2007) 1– 5
West, S.L. et al. Physical inaccessibility negatively impacts the treatment participation of persons with disabilities.
Addictive Behaviors 32 (2007) 1494–1497
Krahn, G., et al. A Population-Based Study on Substance Abuse Treatment for Adults with Disabilities: Access, Utilization, and Treatment Outcomes. The American Journal of Drug and Alcohol Abuse, 33: 791–798, 2007
iiWest, S.L. et al, Rates of alcohol/other drug treatment denials to persons with physical disabilities: accessibility concerns. Alcoholism Treatment Quarterly, 27 (2009) 305–316.
West, S.L., et al, Physical inaccessibility negatively impacts the treatment participation of persons with disabilities.
Addictive Behaviors 32 (2007) 1494–1497
West, S.L., et al., Prevalence of Persons with Disabilities in Alcohol/Other Drug Treatment in the United States
Alcoholism Treatment Quarterly, 27 (2009)242–252.
Practice Guidance: Access for Persons with Disabilities / Issued MAY 2013