Adapting programs to help the developmentally disabled
Despite the fact that more than 5 million Americans have developmental disabilities (generally regarded to include most forms of mental retardation, cerebral palsy, autism, and epilepsy), mainstream addiction prevention, treatment and recovery services are largely inaccessible for this population. In 2011 the National Council on Disability, an independent federal agency that focuses on national disability policy, issued a report titled Rising Expectations: The Developmental Disabilities Act Revisited. The document reaffirmed principles, guiding policies and services aimed at the full inclusion of persons with developmental disabilities in American life, and their rights to:
- Make informed choices and decisions about their lives;
- Live in homes and communities in which they can exercise their full rights and responsibilities as citizens;
- Pursue meaningful and productive lives;
- Contribute to their families, their communities, their states, and the nation;
- Live free of abuse, neglect, financial or sexual exploitation, and violations of their legal and human rights; and
- Achieve full integration and inclusion in society as individuals, consistent with their unique strengths, resources, priorities, concerns, abilities and capabilities.
Addiction treatment and recovery programs, just like restaurants, government services and movie theaters, are obligated to accommodate people with cognitive and intellectual disabilities under the Americans with Disabilities Act (ADA) and other federal/state laws and regulations.
Treatment modification
Few addiction treatment programs have taken the time or expended the resources necessary to modify their services to ensure cognitive accessibility. Addiction prevention, treatment and recovery services tend to rely heavily on abstract terminology laden with nuanced meaning. Terms such as “denial,” “enabling,” “tolerance” and “abstinence” can present significant barriers to understanding for someone with mild mental retardation.
One of the byproducts of cognitive adaptation is that by lowering the intellectual threshold for understanding basic treatment concepts, other groups benefit. This is specifically true for those with limited English language proficiency or low educational attainment.
For example, Step 4 of most 12-Step programs reads: “Made a searching and fearless moral inventory,”an exhortation that links several abstractions into a behavior unfamiliar to most. Contrast that statement with this one modified for easier understanding: “Made a list of things good and bad about myself.”
In addition to concept simplification (see box below on suggested modification of 12-Step language), it is also true that in order to be effective, services for people with cognitive and learning impairments need to include repetition reinforcement strategies as well as graphics/images.
12 Steps of Alcoholics Anonymous
Traditional language vs. modified for easier understanding
| 1. We admitted we were powerless over alcohol—that our lives had become unmanageable. | 1. We admitted we had no control over drugs and alcohol and that we had become powerless and could not control ourselves or our lives. |
| 2. Came to believe that a Power greater than ourselves could restore us to sanity. | 2. Came to believe in a power greater than ourselves and that this power could return us to health and being good to ourselves. |
| 3. Made a decision to turn our will and our lives over to the care of God as we understood Him. | 3. Because we wanted to feel better, we made a decision to turn our lives, inside and out, over to this higher power, which some of us call God. |
| 4. Made a searching and fearless moral inventory of ourselves. | 4. Learned about ourselves and made a list of all our strengths and weaknesses, even though we were afraid and it was hard to do. We added to this list all of the things that we had been hurt or angry about for a long time. |
| 5. Admitted to God, to ourselves, and to another human being the exact nature of our wrongs. | 5. Told God, ourselves, and another person all of the things on our list. We kept nothing secret. |
| 6. Were entirely ready to have God remove all these defects of character. | 6. Became completely ready for our higher power to remove all these weaknesses and angry memories. |
| 7. Humbly asked Him to remove our shortcomings. | 7. Without feeling like we were better than anyone else, we quietly asked our higher power to take away our weaknesses and the things inside that cause us problems. |
| 8. Made a list of all persons we had harmed, and became willing to make amends to them all. | 8. Made another list, this time of all the people we had hurt or made angry at us by our behavior. Once our list was done we became completely ready to make apologies to everyone on the list and to change our behavior so it would not happen again. |
| 9. Made direct amends to such people wherever possible, except when to do so would injure them or others. | 9. Made apologies to these people face to face, on the telephone, or wrote them a letter as soon as we could. The only time we did not make a direct apology was if it would hurt them or someone else. |
| 10. Continued to take personal inventory and when we were wrong promptly admitted it. | 10. Continued to look at ourselves honestly and whenever we were wrong or hurt someone else we immediately admitted it, apologized and worked on changing our behavior so it would not happen again. |
| 11. Sought through prayer and meditation to improve our conscious contact with God, as we understood Him, praying only for knowledge of His will for us and the power to carry that out. | 11. We learned how to pray and meditate every day, which helped us get to know our higher power better. When we prayed, we only asked how we could help, how to behave well, and for the strength and power to do it. |
| 12. Having had a spiritual awakening as the result of these Steps, we tried to carry this message to alcoholics, and to practice these principles in all our affairs. | 12. Once we had done all of the other steps, we realized that we had formed a close new relationship with our higher power, whom many of us now call God. We spent time trying to help other alcoholics and addicts, remembering that all we could do was give them support; getting sober was their responsibility. Because we wanted to stay sober and keep recovering, every day we practiced doing all of the things we had learned. |
Two publications originally developed for the deaf community are excellent for this purpose and are available as free downloads from Wright State University. Looking at Alcohol and Other Drugsand Looking at Treatment of Alcoholism communicate a comprehensive array of information about intervention, assessment, 12-Step mutual aid organizations and the processes of treatment and recovery. Each document is a PDF of more than 200 pages.
An ambitious effort to improve services for people with developmental disabilities is being mounted in Sacramento, Calif., under the leadership of the Alta California Regional Center (ACRC) serving persons with disabilities. Utilizing a community-engagement stakeholder strategy and with funding from the voter-approved California Mental Health Services Act, the project aims to develop a continuum of services for people with developmental disabilities that is unique in the United States.
John W. Decker, the manager of the Forensics Unit at ACRC, is the project director and an experienced social worker with a commitment to developing appropriate services for individuals with developmental disabilities.“The enactment of the Mental Health Services Act by California voters in 2004 created new monies, some of which were set aside for innovative services for underserved populations,” says Decker. “At Alta we saw this as an opportunity to finally help those of our clients who are suffering from or at risk of developing addiction.”
He adds, “People with developmental disabilities are increasingly living independent lives in community settings. Along with that independence is a co-occurring element of risk for some that can lead to the same kinds of alcohol and drug problems experienced by those in the larger society. Unfortunately, when this leads to addiction few mainstream programs are able to accommodate the needs of our people.”
The project is developing a variety of screening and training tools that can be accessed and utilized in other jurisdictions. These products include a learning instrument called the Developmental Disability DizQuiz for training addiction professionals, a simple screening instrument for use at addiction treatment programs, and case scenarios for generating discussion among treatment providers.
Similar learning methodologies are being developed to train developmental disability providers to become more knowledgeable about addiction prevention, screening, treatment and recovery strategies. When fully implemented, the project will include a full continuum of services including residential, outpatient and peer recovery mentoring.
Tianna Roye is the Deputy Director of Bridges Professional Treatment Services in Sacramento. Her agency was the first addiction and recovery provider to seek training and consultation from the project, and she is enthusiastic about the value received.
Roye states, “We had been serving these clients before the project, but not too well. Their difficulties with understanding and participating in our services would become evident, but only after a period of time in our program. Utilizing the training our staff received as well as the special screening questionnaire, we are now able to identify these clients from the start and make sure that their treatment plan is geared for their success. Our staff was quickly receptive because now they had tools with which to help these clients, rather than the frustration of learning, perhaps too late, that they needed a slower pace and simpler terms. We were also helped by the fact that several years ago we adopted a treatment curriculum that was aimed at a 3rd-grade reading level, so we were already attuned to the need to keep it simpler.”
Screening questionnaire
As Roye explains, identifying the cognitive limitations of clients at treatment initiation is crucial. Several simple questions can help to identify whether clients: 1) experience difficulty communicating at an age-appropriate level and understanding directions and/or the consequences of situations; 2) have a history of receiving special education services (especially for mental retardation/intellectual disability or autism); or 3) have trouble obtaining and maintaining employment, and require assistance of others to manage finances, appointments and paperwork/contracts.
Here are the simple questions:
1) Did you ever receive special education services in school? If so, for what?
2) Did you graduate from high school with a certificate of completion rather than a diploma?
3) Has anyone ever told you that you have:
- Learning problems?
- Mental retardation or an intellectual disability?
- Autism?
- Cerebral palsy?
- Epilepsy?
4) Have you ever received developmental disability services?
5) Do you get any kind of Social Security check? (SSI, SSDI) If so, for what?
According to Decker, the project at ACRC is unique. “We would like to hear from others who are doing this work, and are committed to sharing our materials with other communities that care for people with developmental disabilities,” he says.
Those wishing more information should visit the Alta California Regional Center website. All items are in the public domain.
John de Miranda, EdM, LAADC, is CEO of the National Association of Alcohol, Drugs and Disability, a program of Peninsula Health Concepts. He wrote on addiction treatment clients engaging in community advocacy activity in the March/April 2010 issue. His e-mail address is solanda@sbcglobal.net.
