CJI's learning piece
IMPACT

ISSUE 1 - Substance Abuse and MR/DD
- Elspeth M. Slayter, M.S.W. M.A

ARTICLE 1
Identifying Substance Abuse among People with Mental Retardation/Developmental Disability: Risks and Remedies
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A Reason for Concern
Over the past 40 years, people with mental retardation /developmental disabilities (MR/DD) have enjoyed increasing levels of freedom and access to community living. But this increased exposure to community life has lead to greater susceptibility to alcohol and drug problems. Substance abuse in this population can lead not only to increased social isolation after the development of a substance abuse problem, criminal justice involvement, but also to victimization while under the influence, increased cognitive disability, physical impairment, poor impulse control, substance abuse-related medical conditions and the potential for life-threatening cross-reactions with commonly-prescribed psychotropic medications.

Clinicians suggest that people with MR/DD may have a greater susceptibility to the effects of alcohol and drugs than the general population. Substance abuse treatment providers are often unsure of how to treat this population, as standard approaches may not be appropriate or effective. People with alcohol and drug problems are known to have the potential for higher health care costs and contribute significantly to national criminal justice costs. Unchecked, this medical problem could cause significant additional cost to state MR/DD agencies as well as to the Medicaid and Medicare health insurance programs.

Prevalence of Substance Abuse
Nationwide, nearly four million people with MR/DD live in non-institutional, community settings today, about 1.5% of the population. Substance abuse may not be the first thing we think of when considering adults with MR/DD. Those with mild to moderate MR/DD and alcohol and illicit drug problems constitute a marginalized and often poorly supported population. But in 1995, more than 30,000 Americans with MR/DD received services for substance abuse issues (Larson, Lakin, Anderson, & Kwak, 2001). Although this is the best prevalence estimate of substance abuse in this group, it is probably a low estimate; it's based on a measure of service delivery but does not consider the significant barriers to identification of the problem in this population, nor access to treatment that is specifically designed for people with MR/DD.

Broad social and cultural views of this population may delimit the scope of how well, and whether, their substance abuse problems are addressed. Denial of the potential for substance abuse among this population may arise from stigma, fear and discomfort around interacting with people with MR/DD or around addressing a substance abuse problem. All these hinderances may in turn limit access to treatment.

Further complicating the issue is the fact that the symptoms of MR/DD can themselves mask potential substance abuse problems, making identification difficult, not only by MR/DD professionals, but by those in the substance abuse and medical fields as well. Yet, once identified, practitioners are often unclear about best 'next steps'.

Managing the "Dignity of Risk"
Substance abuse in this population raises difficult questions about the civil rights and social responsibilities related to the support and care of people with MR/DD. Current frameworks upon which the social service system for people with MR/DD rests emphasize self-determination and human rights, a response which evolved because of their historic marginalization.

Substance abuse here, however, presents an unusual challenge to self-determination-oriented treatment. Robert Perske coined the term "dignity of risk," which "accuses those who work with handicapped people of going overboard in their effort to protect, comfort, keep safe, take care and watch;…overprotection can smother the person and consequently prevent the…individual from experiencing risk…essential for normal growth and development." (Perlick, 1984:20).

Do people with MR/DD deserve "the dignity of risk" when it comes to engaging in the abuse of alcohol and illicit drugs? Given that people with MR/DD are a vulnerable population, how can the rights of people with MR/DD be balanced with the responsibilities of the state to safeguard both their rights as citizens and their safety? Despite these thorny questions and the challenges associated with identifying substance abuse in this population, there are valid approaches to this problem. Turn the page for a guide to identifying substance abuse among people with MR/DD.

ARTICLE 2
The Maine Approach: A Treatment Model for the Intellectually-Limited
The Maine Mental Retardation Alcoholism Project

During the 1980s, Maine faced the reality of substance abuse problems among its citizens with MR/DD. This heavily rural state could not afford to develop and deliver for them a specialty treatment program. To address this problem, professionals worked to create a general model of "things to consider" when collaborating to serve clients, resulting in six key points:
  1. Recognize that screening and assessment should include medical, psychological and psychiatric assessments, with careful thought given to the potential for distorted diagnostic impressions. Gathering information from client, family and other treatment providers is key to the process.
  2. Identify a specific counselor comfortable with or willing to learn to work with this population. Interventions should start at the individual level, expanding to family and group counseling sessions, as appropriate. Respect for each individual's cognitive level and attention span should inform the direction and timing of all interventions.
  3. Patient engagement should be the primary focus, and for an extended period of time. Not only is this necessary to develop trust between clinician and client, but it is inappropriate to expect clients to readily admit their problems; they should never be terminated for this reason alone. It is important not to launch into confrontational models of substance abuse treatment. All interventions should be 'handled with kid gloves,' but with behaviors nonetheless being addressed.
  4. Interventions should be well-structured, have little variation, and include a reward system.
  5. An authority figure--not the therapist--should be identified for the client.
  6. Finally, involve the client's existing social support system. This will be crucial in the post-treatment phase. This aftercare should also be highly structured. AA meetings are recommended, but an appropriate sponsor should be selected with care.
    For more information see: Kennebec Valley Regional Authority (1984).


ARTICLE 3
Identifying Substance Abuse among People with MR/DD


Here are some of the key signposts:
  • Frequent intoxication: Do recreational activities center around getting and using substances as well as recovering from use?
  • Atypical social settings: Does the person's immediate peer group suggest that substance abuse may be encouraged? Is the person reluctant to attend social events where substances will not be present?
  • Intentional heavy use: Does the person in question use substances along with prescribed medication? Does the person seem to use more than is safe?
  • Job problems: Has the person missed work or been late due to use of substances? Does the person blame his/her MR/DD status for work problems?
  • Health problems: Does this person have medical problems that are aggravated by repeated substance use? Has this person been victimized while under the influence?
  • Problems with significant others: Has a family member or friend expressed concern about this person's substance use? Have important relationships been impaired as a reuslt of substance use?
  • Problems with authority/the law: Has the person been visited by police and/or arrested as a result of alcohol or drug-related offenses?


Adapted from Owen, P. (1999) "A guide to treatment approaches: Linking people with Quality programs." Impact: Feature issue on alcohol and drug abuse services for people with developmental disabilities. Institute on Community Inclusion, Minneapolis, MN.