In the world of social services we sometimes speak of clients falling through the cracks. We use this phrase to refer to the unfortunate phenomenon that occurs when an individual with complex needs requires support from a number of diverse service delivery elements. These systems may have different even incompatible priorities and they may not be accustomed to coordinating or modifying their services. With no comprehensive, coordinated system of support services the client is often unable to benefit from the services of any single delivery system and subsequently falls through the cracks between the systems. This results in increased poverty, homelessness, health crises, criminal justice system involvement and mortality.
Because diverse social service systems are often unable to coordinate services and adapt methodology, not only are long-term prospects of improved health and independence for the client diminished; total taxpayer costs involving the client are significantly increased.
Perhaps nowhere is this falling through the cracks phenomenon more evident than in the case of the client with mental retardation or a learning disability who is addicted to alcohol or other drugs. The gulf between the methods and philosophies of service delivery systems for people with MR and addiction treatment systems might be described better as a chasm than a crack and the consequences can indeed be dire for people who fall into this abyss.
Most programs providing services for people with mental retardation are unfamiliar with addiction and recovery issues. Staff in most addiction treatment programs are unfamiliar with the condition of mental retardation and strategies for helping people with MR learn to develop and implement new skills and behaviors. Developmental Disability service delivery systems are often structured in a fashion that makes effective intervention in substance abuse extremely difficult. Similarly, traditional addiction treatment programs often cannot successfully adapt their services to meet the needs of clients with mental retardation and learning disabilities.
In the past, both systems have been slow to devote resources or make adaptations to better serve the client with MR and addiction. As a result, these clients frequently receive no meaningful help from either system while experiencing a series of failures in both systems.
This has occurred in part because until recently, addiction has not been recognized as a serious issue affecting a significant number of people with MR. However, people with mental retardation and learning disabilities do use drugs and alcohol. They do become addicted to drugs and alcohol. They lose jobs, grow estranged from friends and family, become homeless, lose support systems, go to jail, experience significant health problems, and some, in the end, die from addiction.
The following case histories may help to put a human face on this sometimes invisible issue. They are based on the experiences of five individuals with mild mental retardation who received services from a residential support agency in the Pacific Northwest. The names and some details in the stories of these five people have been altered to maintain anonymity.
Lara entered the social service system as an infant, when it came to light that her family had been putting tranquilizers in her bottle to stop her from crying. After a series of unsuccessful foster care placements, she was sent to live at a large, state operated training institution for the mentally retarded. She ran away dozens of times and frequently contacted STDs while AWOL.
When the federal government forced the state to reduce the number of people served at the institution Lara was sent to live in the community where she would receive services from a private agency contracting with the state. Staff at the institution privately predicted that she would be dead in a ditch within a month.
Lara was somewhat more successful than expected. She continued to engage in promiscuous sex and periodically disappeared for several days at a time. She gave birth to a child who was taken from her custody by the state before she left the hospital.
When she was 24 years old, Lara was deliberately addicted to amphetamines by a boyfriend who did this to make it easier to compel her to prostitute herself to help support his own drug habit. Speed became her drug of choice. She became increasingly paranoid and psychotic while continuing to use and prostitute. Sometimes she would show up to see her social workers cut and bruised from a severe beating. Lara began to imagine she was being followed by the Mafia who planned to kill her and believed that nearly everyone she knew or saw was involved with the mob.
She was committed to a secure mental health facility and became involved with the criminal justice system after stealing a car during an escape from this facility. She was paroled to a specialized foster care/addiction treatment program from which she ran away several times, the last time cutting a probation monitoring bracelet from her ankle. She avoided contacting her residential program, both because she believed that they would turn her into the police and because they were in league with the mob, who wanted to kill her. She was discharged from the local DD service system while she was experiencing amphetamine psychosis, due to her failure to comply with programming and maintain contact with providers.
She eventually drifted to Nevada, where she stole a car at gunpoint and drove to Nebraska before being arrested. She was extradited to Nevada, where she was determined to be unable to aid and assist in her own defense. She was committed to a psychiatric hospital in that state. She escaped from this facility several times and would sometimes travel across several states to visit her old residential program and ask for help. She would usually find her way back to Nevada and commit crimes which resulted in her return to the psychiatric hospital. Her whereabouts are unknown as of this writing.
Jake was from a small town in a rural area. He began drinking as a young teenager to fit in with his friends and family in this community. His father and brother were alcoholics, as well as many of his friends. As well as having MR, Jake developed a psychotic disorder and his behavior was soon too much for the small town and its limited services to cope with. Jake was institutionalized and was eventually transferred to a community-based program several hundred miles from his hometown.
When he arrived in the city he was a chronic late-stage alcoholic. His mental illness and severe seizures were difficult to bring under control. He was belligerent, aggressive and often delusional. He would frequently assault his residential staff. Due to his inability to get along with others in a group situation he was placed in his own apartment with intensive staff support. His general health was poor; severe asthma was aggravated by heavy cigarette smoking. He was unable to properly metabolize seizure medications due to alcohol use. He frequently drank to the point of blackout and was often assaulted and/or robbed in the community. Jakes friends were mainly barflies and street people; these were the only people who treated him as a peer.
He attended a specialized foster care/addiction treatment program, but was discharged for assaulting another client. He had numerous psychiatric admissions and eventual criminal justice system involvement after throwing a case of beer at a police car. He was resistant to any attempt to address his drinking. He admitted he was an alcoholic and saw nothing wrong with this. He said he wanted to live and die as an alcoholic, just like his father. Jake died during a seizure one spring morning after several days of hard drinking.
During his early teen years Lenny was placed in a state institution for the mentally retarded due to uncontrollable behavior, including drinking alcohol and using marijuana, although he tested in the high range of mild mental retardation. He began to drink and use heavily upon returning to live in a community setting in his early twenties. Within two years he had stopped drinking, but slowly began to use marijuana, cocaine, methamphetamines and heroin on a regular basis.
His addiction continued to worsen and Lenny began to prostitute and sell drugs to support his habit. He was frequently in legal trouble and piled up numerous charges for possession and delivery of controlled substances. More experienced and astute dealers would often use Lenny as a lookout or a courier and he would frequently be arrested while the persons who had set him up remained untouched. Lenny would often steal to support his addiction. He would sometimes cheat his business associates at great danger to life and limb. There are frequently people looking for him.
Lenny participated in treatment in a specialized foster care facility after suffering an amphetamine overdose with cardiac complications. He had a short period of sobriety there, but returned to his home city when the program closed. He relapsed shortly thereafter. He was formerly admired and imitated by other clients in his residential program, but they came to scorn and avoid him as his addiction worsened.
Lenny has participated in several integrated traditional treatment programs, but has always been discharged prior to completing treatment due to behavioral issues or inability to keep pace with the group. He has been on probation and parole for years and is in and out of jail on a regular basis. During incarceration and after release he usually claims he wants to get clean and turn his life around, but usually relapses within a week. His use spirals out of control until he is arrested again.
In 1996 he overdosed on heroin and was clinically dead before being revived by paramedics. However he continued to use heroin. In early 1998 Lenny reported experiencing a moment of clarity while in jail. When released, he began participating in specialized outpatient treatment five days per week, as well as attending several NA meetings per week. He was initially accompanied by paid staff, but slowly began to attend independently. He was able to establish four months of sobriety. In the spring and early summer he began using small amounts of alcohol and quickly reverted to using heroin, cocaine and methamphetamines.
In late 1998 he was shot in the abdomen while in an area well known for drug trafficking. For the past three years he has spent the majority of his time in jail and is incarcerated at the time of this writing.
When she was a young girl Billies parents took her to a state institution for the mentally retarded and told the crying youngster that they would be back to pick her up in a half hour. They never returned. Billie remained here until her mid-twenties running away frequently and developing a reputation as a troublemaker. When the federal government forced the institution to downsize Billie was sent to live in the community where she soon began to drink almost every day; frequently to the point of blackout.
She was sober during a court-mandated stay in a foster care/addiction treatment program for a short period of time, but relapsed after this program closed. Finding housing for Billie became extremely difficult. She was very loud, especially when drunk and frequently antagonized her neighbors. This made it impossible for her to live in a group home or an apartment. Her residential provider rented a small house for her. While she lived there, she was in significant danger of harming herself. She burned her face and hair several times while trying to light a cigarette, threw pans of burning grease at neighbors, started fires, ritually cut herself, wandered into busy traffic and otherwise injured herself on numerous occasions while drinking.
She would often invite strangers into her home who would sometimes abuse and/or steal from her. Billie is frequently detained by the police and taken to a sobering facility. Her friends are mainly street people and other alcoholics. She commits acts of prostitution for alcohol or money to buy alcohol.
She frequently threatens to kill herself when she is drunk, but refuses assistance when the police or service providers arrive. Police stopped responding to suicide calls from her home, because these have been so numerous. She developed an extremely poor rental history and few landlords were willing to rent to her. Her residential program began renting her rooms in motels and hotels in part, because this would allow the police to intervene if she was drunk and in danger of harming herself.
She experienced a reaction to the alcohol antagonist medication Disulfiram in 1996, which left her with greatly reduced capacity to use her legs. She was not highly motivated to physically rehabilitate herself and continued to rely on a wheelchair for the next two years. Although she has been able to string together a month or two of sobriety on occasion, she has not been able to maintain motivation and remain sober. The county program, which funded her support services, has reduced that funding from about $3,000.00 per month to less than $300.00 per month due to her noncompliance with programming. No agencies are willing to work with her for this amount of money. She is currently homeless and spends many nights on the street in her wheelchair.
Vernon is a man in his early 20s. He tests in the low range of mild mental retardation. His drug of choice is alcohol, but he uses other substances opportunistically. He has been evicted from several living situations due to drunken behavior. He has been arrested and taken to a sobering facility several times. He has used injectable drugs while drunk, even though he did not know what drugs were in the syringe, referring to Steroids or Hawaiian Punch. He has prostituted himself for money for drugs and alcohol. He has been assaulted and injured by persons in the community on numerous occasions.
He assaulted a girlfriend while drunk, spent three weeks in jail and was placed on probation. He tried to continue drinking although he was taking court-ordered Antabuse, a medication that would make him extremely ill if he drank alcohol. He frequently spoke of wanting to drink a few beers to relax. He had a severe neurological reaction to the Antabuse, which was then stopped.
His residential support provider developed an outpatient treatment group in conjunction with an experienced addiction treatment provider. The focus of the treatment was based on behavioral change rather than insight. The group met every weekday. Although Vernon had a number of relapses and some subsequent incarcerations, after two years in treatment, he has been sober for 10 months and lives in an alcohol and drug free housing program developed by the agency which provides his residential supports.
How Widespread is the Problem
There has not been extensive research in the area of mental retardation/learning disability and addiction, but what research has been conducted indicates a growing problem that may have catastrophic consequences if not recognized and addressed.
In the National Household Survey on Drug Abuse (1994) conducted by the Substance Abuse and Mental Health Services Administration, 10.8 percent of respondents admitted using illicit drugs in the past 12 months.
Dr. Joseph Westermeyer, Kemp and Nugent (1996) have published findings from a study that was undertaken on a sample of 642 persons receiving substance abuse treatment services at two university-affiliated clinics. Their findings indicated that the persons in their study who were identified as having mental retardation, in comparison with the non-disabled participants in the study, had a later onset of use and lower frequency of use, had less lifetime use of all illicit substances and had shorter latency between the time of first use and problems resulting in a need for treatment. For the client with mild MR, lighter substance abuse, starting at a later age, results in a need for treatment more rapidly than for the general population.
Perhaps the most troubling finding of this study, however, is that while persons with mental retardation comprise about 1-3 % of the general population the rate of MR in this sample study was 6.2 %. This could indicate that persons with mental retardation experience addiction-related psychosocial crises and health problems resulting in a need for intervention at almost twice the rate of the population at large.
In Portland, Oregon, the Multnomah County Developmental Disabilities Services Division conducted an informal poll of 26 of its service coordinators for an unpublished internal report in April 1998. Thirteen service coordinators responded and identified 63 clients needing substance abuse treatment services. The actual number of clients may be higher due to the informality of the poll. (For instance, the program, when asked for additional details, was unable to say whether the 13 service coordinators who did not respond to the poll failed to respond, because they had no clients to report or if they did not respond for some other reason. The program also could not say whether there were additional service coordinators beyond the 26 polled who might have been able to identify additional clients with substance abuse issues.)
Of the 63 clients identified 22 were reported to be receiving or to have received addiction treatment services through one or more of 15 identified treatment providers or support groups available in the community. Of these 22 people only one individual had managed to remain abstinent for one year following treatment.
Other data that is just beginning to emerge also indicates that substance use and abuse are a growing problem for persons with cognitive disabilities. The Wright State University School of Medicine in Dayton, Ohio, operates the Substance Abuse Resources and Disability Issues (SARDI) Program and the Rehabilitation Research and Training Center (RRTC). In 1996, the RRTC published results of an epidemiological study of substance use and abuse by consumers of vocational rehabilitation services in Ohio, Michigan and Illinois. A total of 1,876 individuals responded to this survey. Mental retardation was reported as the primary disability by 4.3 % of respondents; learning disability was reported as primary disability by 14.3%. (This author communicated with Dr. Eddie Sample of the RRTC to obtain specific epidemiological information that was gathered in the survey.)
In the RRTC survey 12.8% of respondents self-identified as having mental retardation admitted illicit drug use in the past 12 months and 19% of those who identified themselves as having a learning disability made such an admission. These preliminary figures indicate that persons with MR are using illicit drugs at a minimally slightly higher rate than the general population. One would assume that similar rates, if not higher, would be seen for use of alcohol. However, the vast majority of persons with MR who experience use and addiction issues have cognitive functioning in the mild/borderline range and live in their own residences. Although this type of information was not obtained at the time, it is a reasonable assumption that if the group of VR consumers with MR in the RRTC survey were pared down to exclude those living in group homes and/or testing at an IQ below 55, those remaining in the group would be likely to show a rate of use similar to the population self-identified as learning disabled, which is to say nearly double the rate for the general population.
While people with MR may be using drugs, alcohol and developing addiction related problems, at an equal or higher rate than the general population, most research and practical experience indicate that these clients have little chance of developing long-term sobriety in non-specialized addiction treatment programs.
Annand and Ruf(1998) write, Even though the incidence of addiction among persons with mental retardation is the same or greater than in the general population there are few recovering alcoholics who have mental retardation in our society, In terms of accessing effective treatment, They face barriers that are not present for non-MR addicts. Normal treatment expectations are ineffective and mainstream treatments programs inappropriate. (Annand and Ruf, 1998)
Westermeyer et. al. (1996) reports that substance abuse treatment staff usually do not recognize the MR condition or have skill and experience in dealing with MR clients. Cognitive methods of recovery (e.g. relapse prevention, applying the 12 Steps to daily life) seldom were effective...
Tomasulo (1998) writes that for persons with MR and addiction, ...the usual channels for treating substance abuse are neither prepared nor inclined to provide effective services. He further states that, The combination of cognitive limitations, developmental delay, and psychiatric involvement create a need for a different approach to the treatment of alcohol abuse.
Cattan and Grossman, (1995)of the MIRCA Project (Mentally Ill / Retarded Chemical Abuse) of Westchester County, New York, report that in integrated treatment programs, cognitive limitations make it difficult for clients to understand the concepts taught and therefore contribute to group sessions. As a result, they may be stigmatized, resented, or excluded...many developmentally disabled consumers were viewed as disruptive and uncooperative and were discharged from the substance abuse treatment program.
A report entitled The Maine Approach: A Treatment Model for the Intellectually Limited Substance Abuser (1984) reports that most substance abuse treatment programs in that state ... have little experience in identifying, assessing and treating the intellectually limited client and what experience they have had left them feeling inadequate and frustrated... The Maine Approach suggests that treatment would be more effective if ... the length of the sessions are shortened to accommodate clients with a short attention span... as well as increasing the number of sessions per week. Also, Counselors may need to slow down the pace of treatment and repeat information over and over
Bjorgen (1989) reports that Project Adapt: a Differential Approach to Prevention and Treatment of Substance Abuse Among Persons with Developmental Disabilities, advocates for a cooperative arrangement between A&D and DD providers that would facilitate treatment for the addicted client with MR in integrated treatment programs. Project Adapt does, however, note that problems integrating persons with developmental disabilities into the group process is a barrier to effective treatment. This model asserts that while these clients can benefit from the same kinds of services as other A&D clients, the delivery of these services needs to be modified. Suggested modifications include more intense support, more structure, more concrete approaches and extended length of treatment and repetition of concepts.
Lottman (1992) reports that many substance abuse treatment agencies are willing to accept clients with MR, but cite a lack of training and resources as a barrier to effective treatment. He goes on to note that ...the generic chemical dependency service system is besieged by other priorities and service demands and that it is incumbent on the MR service system to insure effective resources for case detection, referral and training.
Brady (1993) writes Despite the appropriateness, desirability and value of normalization in other spheres of the dually diagnosed individuals life, our experience would suggest that group treatment programs involving individuals with significant disparity in cognitive functioning have generally not been effective. In such groups, our dually diagnosed clients were either resented and stigmatized or excluded, or the members of the group would tend to take them under their wing and thereby initiate actions which could be described as care-taking. Neither of these is conducive to group therapy.
Bellows (1996), in his doctoral dissertation identifies the following obstacles for the DD/A&D client in traditional, integrated addiction treatment programs:
Treatment is too rapidly paced and not enough time and repetition is given for the clients slower learning rate.
Counselors may be overly sympathetic towards clients and not able to be confrontive when appropriate.
The clients lack of knowledge about the effects of substance abuse and their black and white thinking may be interpreted by staff as denial.
No validated standard model for standard treatment exists in this population.
Bellows goes on to quote L. Cherry, Project Director for the Institute of Alcohol, Drugs and Disability as stating that his program has not been successful in integrating clients with mild retardation into traditional treatment programs ...because these populations require more than a translation of methods. They require a complete rethinking of the methods, modes and materials of presentation... before they will be successful. (Bellows, 1996)
Dr. Matthew Ferrara has developed an addiction treatment model for persons with mental retardation. Dr. Ferrara suggests that counselors should Expect the treatment to take longer perhaps three or four times as long... Expect to repeat all interventions many times... Use writing assignments judiciously... Keep them simple (Ferrara, 1992). These recommendations would be difficult to implement in most traditional substance abuse treatment programs.
Ferrara (1992) goes on to identify the following barriers to successful intervention for these clients:
It is difficult to recruit and maintain quality staff to work with this population.
The time period for program pay-off is long-term, thus, it is difficult to support and protect these programs.
Frequently, there is support for and participation in substance abuse behavior by family members and caretakers.
Persons with MR face societal, cultural, and psychological barriers that isolate them from the general public and from the treatment options available to persons without disabilities.
Some persons with MR may feel entitled to drink alcohol or use drugs because of their frustration and disappointment.
Persons with MR are often underemployed and consequently lack job related incentives to seek treatment.
Because the substance abuse treatment community offers disjointed services it may be difficult for clients to access services.
The scientific literature fails to adequately address the unique treatment problems posed by these clients.
Treatment activities are paced too quickly and not enough time is allowed for the clients slower rate of learning.
Counselors may be overly sympathetic towards clients and not confront clients when appropriate.
The clients lack of knowledge about substance abuse and concrete thinking may be inappropriately confronted by staff as a form of denial.
Program models for these clients are experimental and no valid standardized model for treatment exists.
Can we expect to see better results if specialized treatment and support services are available? There are few examples to cite, but the outcomes are promising. The following information was obtained by directly contacting the programs described.
The Anixter Center in Chicago operates outpatient and intensive outpatient treatment programs for people with an array of disabilities. They have about 30 individuals in treatment at any given time and about 25% of these clients have mental retardation. Natalie Zubenko, the programs director, reports that for MR clients who continue participation with the program for 18 - 24 months abstinence rates nearing those seen in the general treatment population are achieved.
Rehabilitation Programs Incorporated in Poughkeepsie, New York, operates the Waryas House, a facility providing specialized residential treatment services for persons with MR and chemical dependency. The program has 13 beds and is highly structured. Denise Sherman, the programs manager, reports that her program needed to seek waivers from the New York State DD system in order to provide traditional A&D treatment services in a DD program. Waryas House is funded by both the DD and the A&D systems in New York. Ms. Sherman reports that between 1995 and March 1998 eight persons have graduated from the two-year program. Only one of these individuals has relapsed and this occurred after the individual had maintained sobriety for three years. Waryas House expected to graduate seven more individuals in 1998.
The Association for the Help of Retarded Children, in New York City, operates an outpatient treatment program serving 85 persons with mental retardation and addiction. Clients receive formal treatment services for at least one year. Deborah Lombardi, who works with the AHRC, reports that the program holds a certificate awards ceremony every six months, and at its most recent ceremony (Spring 1998) twenty-two of the eighty-five clients in the program had been sober for at least one year.
Despite the growing body of evidence that addiction in individuals with MR or other learning disabilities is a serious issue which needs to be addressed by both the A & D and DD systems this issue has gone largely unrecognized and very few specialized resources have been developed to meet this challenge. Mainstream programs are often specialized to meet the unique needs of many groups: African, Asian, Native Americans, sexual minorities, women, teens and persons with mental illness. There is no equivalent effective alternative for most chemically dependent people with cognitive disabilities.
Several different treatment models have been developed for this population. There have been varying degrees of implementation and success. There is no standard proven model for providing addiction treatment services for clients with MR. In order to develop an effective replicable model, various communities need to recognize the need for specialized services and support the development of these services in their area.
Equally as important, those developing and delivering these services need an ongoing opportunity to compare notes, to evaluate philosophies and methodologies in terms of client outcomes and cost-effectiveness allowing providers to continually improve and fine-tune their particular approach to treatment. This could take the form of conferences, a professional organization and/or an ongoing newsletter.
These steps will lead to one or two accepted, proven, replicable treatment models being developed over the next several years and there will be a network of professionals in place to promote the implementation and availability of specialized treatment programs. There is no reason to believe that once these services are available treatment success rates for clients with mental retardation and learning disabilities should not parallel those seen for others in recovery.
Annand, Gerald N. and Ruf, Greg (1998) Overcoming barriers to effective treatment for persons with mental retardation and substance abuse problems. National Association for the Dually Diagnosed Bulletin. Vol. 1 No. 2, March/April.
Bellows, Thomas (1996) Recovery House: Residential Facility for Persons with Mild Mental Retardation and Substance Dependence. UMI Dissertation Services.
Bjorgen, Diana (1989) Project Adapt: a Differential Approach to Prevention and Treatment of Substance Abuse among Persons with Developmental Disabilities. University of Montana and the Montana Developmental Disabilities Planning and Advisory Council.
Brady, Kevin (1993) Substance abuse in the dually diagnosed. National Association for the Dually Diagnosed Newsletter. Vol. 10, No. 5.
Cattan, Leslie and Grossman, Patricia L. (1995) from a handout at the 1995 Annual Convention of the National Association for the Dually Diagnosed.
Ferrara, Matthew (1992) Substance Abuse Treatment for Persons with Mental Retardation, Texas Commission on Alcohol and Drug Abuse.
Longo, Lance P. (1997) Alcohol abuse in persons with developmental disabilities. Habilitative Mental Healthcare Newsletter. 16-4. July/August.
Lottman, Thomas (1991) Access to Substance Abuse Services for People with Mental Retardation. University Affiliated Cincinnati Center for Developmental Disorders.
Maine Department of Mental Health and Mental Retardation. The Maine Approach: A Treatment Model for the Intellectually Limited Substance Abuser. (1984).
National Household Survey on Drug Abuse Substance Abuse and Mental Health Services Administration. (1994)
Substance Abuse Among Consumers of Vocational Rehabilitation Services: Executive Summary of an Epidemiological Study Rehabilitation Research and Training Center on Drugs and Disability (1996). School of Medicine, Wright State University. Also summarized in Substance Abuse Resources and Disability Issues (SARDI) Newsletter. Online (1997) Volume 8, Number 1, Fall.
Tomasulo, Daniel J. (1998) Drug abuse treatment for people with mental retardation. Who will do it? Mental Health Aspects of Developmental Disabilities 1:1 Jan/Feb/Mar 1998.
Westermeyer, Joseph; Kemp, Kenneth and Nugent, Sean (1996) Substance disorder among persons with mild mental retardation. The American Journal on Addiction, 5:1 Winter.
For further information contact:
Adaptive Recovery Options
3701 SE Belmont, Portland, OR 97214
For NADD readers who would like additional information on issues of drug and alcohol abuse in people with all sorts of disabilities, including mental retardation, I recommend Substance Use Disorder Treatment for People with Physcial and Cognitive Disabilities (Treatment Improvement Protocol (TIP) Series, #29), available FREE from U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Substance Abuse Treatment. 1-800-729-6686. -Ann R. Poindexter, M.D.