Mary Genne' Phillips, M.S., C.A.S.A.C.
That developmentally disabled people live in protected environments and therefore, do not have access to alcohol and drugs is an antiquated notion. Since the early 1970's and the focus on de-institutionalization, persons with developmental disabilities, including mental retardation, live in varying degrees of independence in the community. To anyone who has worked with developmentally disabled persons in the past twenty years it will come as no surprise that being intellectually challenged does not rule out the possibility of being chemically addicted. Persons with developmental disabilities, including mental retardation, are just as vulnerable to the process of addiction as anyone else.
Additionally, it is not clear from the existing data what parameters define ' problem drinking' for people with MR. That is, how much is too much for individuals with cognitive and adaptive limitations" (Cocco,2002)? Because developmentally disabled individuals often have diminished capacity for making sound judgements, it stands to reason that alcohol would, of necessity, diminish even further the process of judgement making. The disinhibitory effect of alcohol when combined with the impulsiveness of a person with mental retardation can result in lethal decision-making.
For individuals who have spent a good deal of their lives in a protected arrangement, learning to live in the community is no small task. Indeed, many younger individuals who have "graduated" into the community from supervised situations such as residential schools, their parents' homes, or congregate care residences, now face the slings and arrows offered up by the "real world." It does not take long to learn that the use of alcohol and other drugs takes the "edge off" the harshness of reality, and provides some instant "feel better" gratification. That certain chemicals have the potential for creating additional misery is more lost on them than it is on people who are not disabled.
The upshot is this-persons who are developmentally disabled are living in the community, and often, are pretty much on their own. Many are alcoholics and addicts, and their lives, while difficult to begin with, have now become, unmanageable. Historically, service systems have not wanted to serve this population. They are perceived as more difficult to treat, which many who provide services to this population would argue is an accurate perception. Treatment is often complex and of relatively long duration which also tends to make it costly. (Mayer, 2001)
Barriers to Treatment
The following are some of the factors that impact the treatment of intellectually limited chemical abusers:
1. Expressive and receptive language deficits:
a) communication disorders
b) difficulty making one's needs understood
c) Paucity of basic information and vocabulary
Kevin, a thirty eight year old man with mild mental retardation and an articulation disorder went to a support group for alcoholics where his attempt at telling his story was met with snickers of derision. He never went back.
Ed, a twenty nine year old man with mild mental retardation was told by the worker at the social services department that he would need "documentation of income to qualify for low income housing." Ed had no idea of what she was talking about and continued to be homeless.
2. Concrete Thinking:
a) unable to comprehend abstractions
b) often cannot understand "cause and effect" relationships
c) cannot benefit from analogous situations.
Howie had been going to AA for twelve years and could quote all of the slogans although he had no idea what any of them meant. He was attending because someone told him it would "help my drinking." He had not been sober during that entire period.
Sam enjoyed hearing the stories of people in an AA meeting. He could not, however, apply them to his own situation. To Sam, it was pure entertainment.
3. Low frustration tolerance.
a) easily angered
b) very little ability to defer gratification
c) often are not persistent about achieving goals
d) may not understand what the goals are.
4. Desire to be perceived as "normal"
a) often have unrealistic ideas of what "normal" means.
b) often have unrealistic goals and set themselves up for failure (this is often exacerbated by well-meaning workers who, for example, sign the client up for G.E.D. classes, or place clients in unsuitable job-training programs. )
c) wanting to "fit in" by going to bars and buying drinks for everyone.
Susan is in a supported work program where she makes just enough money to supplement her public benefits. She cannot understand why she doesn't own a house, a car, and work in a "fancy office like they have on T.V."
5. Deficits in making sound judgements.
a) unable to understand "cause and effect" relationships for judgement making.
b) tendency to be impulsive
c) inability to learn from life experience (especially true if the person had fetal alcohol syndrome)
A forty five year old woman with mental retardation. opened her apartment door to a perfect stranger at two o'clock in the morning. She was raped. Why did she open the door? "He sounded like he would be mad at me"
6. An enabling system
a) most people with mental retardation are supported by public benefit programs which will remain in place even if the person doesn't get sober.
b) prevented by the system from "hitting bottom"
c) less likely to be motivated to get sober.
d) unable to comprehend the "cause and effect" relationship between substance abuse and problems.
Every time Bill walked downtown and got too drunk to find his way back to his supported apartment, a staff person would come and pick him up.
7. Co-occurring Psychiatric Disorders
a)" It has been estimated that 40% to 70 % of individuals with mental retardation have diagnosable psychiatric disorders."
b)."...impairments in cognitive and verbal skills make it difficult for many developmentally disabled individuals to articulate abstract or global concepts such as a depressed mood". (Silka 1997)
8. Unrealistic expectations
a) Well-meaning workers in all service providing agencies tend to be unaware of the developmentally disabled person's limitations and have ascribed to the notion that anything a normal person can do, so can a person with mental retardation - only slower.
b) This can be a "set-up for failure".
Stewart, a 37 year old man with mild mental retardation and traumatic brain injury as the result of a pedestrian-car accident, told a young worker that he wanted to study to become a psychologist. She enrolled him in a G.E.D. program which was so far beyond his ability, that the G.E.D. program referred him to a job training program for people with mental retardation. Stewart is currently bagging groceries. He feels like a failure and has become increasingly dysphoric. His drinking has increased.
9. Most chemical dependency professionals lack the training and skills to work with persons who are mentally retarded.
a) According to a survey of chemical dependency specialists, most thought that they were inadequately prepared to deal with disabled persons and believed that persons with developmental disabilities should be treated in specifically designed programs (Longo,1997).
10.Living in the least restrictive environment without the skills or intellectual capacity to make good decisions.
a) Many, if not most, individuals who have mental retardation would probably benefit from having a more protected environment, but, for a variety of reasons, are unable to request it.
The literature states that a need exists for programs that are designed to treat individuals who have developmental disabilities combined with chemical dependency. At least one such program does exist. It combines a specialized, free-standing program for intellectually limited people who are abusing alcohol and other drugs, with training options for addictions professionals who are willing to work with mentally retarded people.
A Treatment Program With a Different Approach
Since 1991, The Dutchess County( New York) Department of Mental Hygiene (DMH) has provided such a program, initially through the combined efforts of the New York State Developmental Disabilities Planning Council and the New York State Office of Alcoholism and Substance Abuse Services (OASAS). The program, the Clinic for the Multi-disabled, is a specialized unit, licensed by both OASAS and the New York State Office of Mental Health. The unit's specific mission is to provide mental health and chemical dependency treatment to people who are developmentally disabled.
This program was started as a result of the awarding a grant designed to examine a variety of ways to address the challenge of developmental disabilities and chemical dependency issues. Based on that study, DMH developed the Chemical Dependency component of the Clinic for the Multi-disabled.
Initial efforts included the development of the Developmentally Disabled Chemical Dependency Consortium. Services providers in both the developmental disabilities community as well as services providers in the addictions treatment community were brought together for monthly brain-storming and net-working sessions. It was through these sessions that many of the first "patients" were identified. Rapport was built by an exchange of ideas and information by both communities of providers, which ultimately facilitated referrals to the fledgling program.
The program consists of individual and group therapy, and if necessary, medication management. Consumers are not brought into the chemical dependency component of the clinic until an assessment of their drinking/drugging and psychiatric problems has been accomplished. The Addictions counselor performs the intake, assesses the chemical dependency and refers the patient to the psychiatrist who performs a psychiatric evaluation. The Addictions Counselor, together with the consumer, develops a treatment plan which addresses substance abuse issues as well as mental health issues, the effect upon the consumer's well-being, the goals of treatment, and behavioral and measurable objectives for achieving each goal. The consumer's input is documented in the plan. The plan is written quarterly with subsequent plans identifying progress toward each goal. Consumers are apprized of their rights as patients in a mental health facility with a document that has been specially written for the comprehension of people who are intellectually challenged.
Assessment of Chemical Abuse
An assessment tool was developed that provides the non-reading person with a series of pictures of people in situations that depict the DSM-IV diagnostic criteria for "substance abuse disorders. " The patient is asked to identify what is going on in the picture and then tell a story about what he thinks will happen next. Patient is asked if he or she knows of "someone" who has had that experience. The written version allows for the client to listen to a sentence about an activity (such as buying, using, drinking) and then finishing the sentence in his own words. A pictorial presentation that depicts the possible consequences of each activity is provided. The patient chooses the picture that he thinks is the consequence. This tells the counselor a great deal about the patient's drug use. It is interesting to note that these "tests" are a big hit, even with long-time, hardened addicts, because it is an activity in which they can succeed. Asking for their participation in this activity validates the counselor's expectations that they are capable people who can take a test and do well. It also provides the client with the counselor's unconditional positive regard for an hour.
A work book is used to teach the very basics about addiction. Each consumer in the program has his/her own workbook. Consumers are told " some people enjoy using this workbook." They are then asked if they would take a look at it and decide if they want to use it in sessions with the counselor. If the consumer makes remarks about it's simplicity or its complexity, they are presented with the same material, but not in workbook form. One exercise per session is the limit. On the next session with the counselor, the material from the previous is session is reviewed. Sessions are frequently repeated using alternative teaching materials.
Some of the pictures of the assessment tools are used for teaching. The client is provided with his own set of pictures. He/she is asked to use pictures, work sheets (which are read aloud by the counselor) over and over again. Repetition is key with this population.
Patients who wish to attend recovery meetings in the greater community are encouraged to do so. An alternative group is provided for consumers in the Clinic for the Multi-disabled Program. This group, "The Mansion Street Recovery Group," has been well attended for the past eleven years, and like twelve step programs, includes "old-timers" and new comers. The old-timers are consulted before a newcomer is brought into the group. A new person will attend one meeting on a trial basis.
Though this is not a twelve step program, it does teach people who want to attend a twelve step program appropriate ways of behaving in a meeting, the meaning of twelve-step lore, and the disease concept of addiction. The major difference in the recovery group is the emphasis on being capable and empowered to make changes in one's life. The concept of powerlessness in most twelve step programs, is too abstract a concept, and more importantly, these are people who have rarely had any control over anything in their lives. The notion of being able to take charge of their own lives is very appealing and is often met with great success.
Many of the consumers in the Mansion Street group were "treatment failures "in other programs and were referred by other OASAS programs to the clinic. The referral almost always states that the consumer was "lost" in groups and was unable to benefit from their program. In addition to being developmentally disabled, many Mansion Street Recovery Group consumers also have mental illness, thereby giving them the distinction of having three diagnoses.
The Mansion Street Group belongs to the consumers. They make the rules, enforce the rules, and lead some aspect of the group. Groups meet weekly and each group has a consistent format including reports on their week, their recovery, the recovery tools they have used, and a group activity. If one or more persons reports a slip, the group engages in a role play depicting the slip. Each person provides suggestions to the person on what they might have done differently to prevent the slip. Should a person have a major relapse, he or she is brought back into individual counseling for a number of sessions before he/she can come back to group. However, this is at the discretion of the group who, by, consensus, decide what is best for the person as well as for the group as a whole.
Emphasis is placed on the consumer's ability to succeed, rather than the fact that they are "patients" in a mental health clinic, and addicts as well. In addition to addressing recovery issues, other topics are addressed, most of which are geared toward enhancing self esteem, learning social skills, and learning about the medication that they are taking for their mental illness.
Drug testing and confrontation
Confrontation is done in a low key manner that demonstrates care and concern. Many consumers are being drug tested each week by parole officers or probation officers. If the group suspects that someone is using and that person continues to deny it, the consumer is asked if he/she will submit to a urine screen. If the patient refuses, he/she returns to individual counseling for a month before attending group again. Treatment is never denied anyone, including those with chronic relapse problems.
Consumers in the program can easily access other services. The Department of Mental Hygiene contracts with the local Mental Health Association for the provision of Case Management services. Consumers who are also parents are referred to the Special Needs Parenting Program. Job training, supported employment, and housing programs can also be accessed. Direct services include medication management and mental health counseling. Many of the consumers benefit from all of the available services. Consumers who require more than an outpatient program can be referred to a long-term inpatient program which combines an Office of Mental Retardation and Developmental Disabilities licensed residence with an in-house OASAS licensed chemical dependency program.
Education and Outreach
Education and training services for personnel in other service providing agencies are available through the program. Workers in social services, housing agencies, case management agencies, job training programs, parenting programs, and criminal justice programs are offered and encouraged to access training on communicating with persons who are developmentally disabled. In addition, the identification of alcohol and substance abuse problems in this special population is covered.
A great many positive outcome stories have resulted from this program. Because most of the consumers in the out-patient program remain in the area, it is possible to track them and see the changes in their lives. Families have been reunited, housing, health, mental health, and legal problems have been ameliorated, individuals have gone through job training programs, and many are in supported employment programs. The most important outcome, is that in some small way, quality of life has been enhanced. The consumers who tend to be attracted to the program are to be respected for their survival skills, resilience, and tenacity.
Components Necessary for Starting a Specialized Program for Consumers with Chemical Dependency Problems and Developmental Disabilities
1. Cooperating local agencies.
2. Willingness to be flexible
3. Professionals from both sets of services providers (Developmental Disabilities and Chemical Dependency)
4. Funding sources
7.. An identified need (it's there - you just have to find it)
Cocco, K. M. & Harper, D. C. (2002). Substance use in people with mental retardation: Assessing potential problem areas. Mental Health Aspects of Developmental Disabilities, 5 (4).
Mayer, M. A. (2001).SAMIRIS: Substance abusers who have both mental illness and mental retardation. NADD Bulletin, 4.
Longo, L. P. (1997). Alcohol abuse in persons with developmental disabilities. Habilitative Mental Healthcare Newsletter, 16 (4).
Silka, V. R. & Hauser, M. J. (1997). Psychiatric assessment of the person with mental retardation. Psychiatric Annals, 27 (3).H