It is estimated that fifteen percent of those with developmental disabilities are addicted to drugs or alcohol - the same as the percentage in the rest of the population. In New York City, this translates to about 2,000 people, though the numbers may be much higher. According to a study released in 1999 by the National Association on Alcohol, Drugs & Disability, the incidence of substance abuse is growing among those with disabilities at two to four times the usual rate.
But getting help is a lot harder for someone with a developmental disability for several reasons. While an abundance of treatment programs exist for substance abuse, very few address the unique needs of those with cognitive difficulties. Despite the Americans with Disabilities Act, there has been a lag in modifying treatment to accommodate this population. In terms of social service provision for the developmentally disabled, there is scant screening for substance abuse, and frequently, a lack of awareness about the problem. Moreover, there are disincentives in terms of funding system requirements.
Deborah Lombardi is the Coordinator of Sobriety Services, the only day treatment program of its kind that serves people with developmental disabilities and substance abuse problems. According to Ms. Lombardi, drinking affects someone with a developmental disability profoundly. In the substance abuse field the Jelenick scale is commonly used to demonstrate the downward spiral of alcoholism. "Our people get there much quicker," Ms. Lombardi explained. "The results are devastating."
Sobriety Services, a 10 year-old program at Union Square in Manhattan, is part of the Association for the Help of Retarded Children (AHRC). Through individualized therapy, medical and psychiatric counseling, and a guided 12-step program approach, AHRC's Sobriety Services works with 100 developmentally disabled men and women, both adolescents and adults, in their outpatient alcoholism clinic.
Modifications from mainstream substance abuse treatment includes smaller groups; special materials that explain the literature (including the 12 steps) in pictures and concrete language; alternative avenues of expression, such as art; and a supportive community that includes others with similar disabilities.
Donna Mae is forty years old, from Brooklyn, with a 13-year old daughter. As a child, Donna Mae ate plaster containing lead paint. As a result, she is cognitively impaired, cannot read or write, and has difficulty measuring time. She starting smoking marijuana in her mid-20's and then her sister introduced her to crack. Her sister was able to stop, but Donna Mae was not.
Last December, Donna Mae went into her fourth detox. This time when she got out, she followed it up with the Sobriety Services program and recently celebrated 90 days drug free. "I'm proud of myself for getting my 90 days," she confided. "I never did it in my life. My daughter is proud of me. I just feel good."
Carl is 37 years old, from the Bronx, and recently counted his 253rd day off alcohol and drugs. "This place is keeping me out of jail and on the right track," he volunteered. "Everybody here, we're like friends. Without this place, I'd still be out there using."
Carl, mildly mentally retarded, was suicidal and living on the streets before he got sober. He had tried other programs, but without success. "Here it's different," he said. "It's like my family. " Carl goes to regular Alcoholics Anonymous and Narcotics Anonymous meetings on the outside, but says he feels safest at the meetings held at Sobriety Services. "I feel more secure here."
Lynda Sounds Off:
Unfortunately, AHRC's Sobriety Services stands alone in NYC and they can only serve 100 people, It is also a day program, not a residential treatment program.
"There are only 12 beds in the whole state set aside for residential treatment of people with developmental disabilities and substance abuse problems," said Ms. Lombardi. "The state needs to recognize this unserved population. We need residential inpatient halfway houses where people can live and be in treatment."
Lombardi suggests a collaborative effort between AHRC's Sobriety Services and existing residential treatment programs. "I'd love to collaborate with a residential treatment facility that would be willing to accept training from us for this specialized group and devote resources to service this population."
A collaborative effort with an existing program makes sense economically as well; completely replicating existing treatment facilities would be very costly.
Funding sources, however, often discourage such collaboration by their distinct focus, such as mental retardation or substance abuse, not allowing for cross-over services or not understanding the need for modifications when dealing with a dual diagnosis. A task force is needed, made up of people working on all sides of the issues, to better integrate these distinct service systems. Without some form of collaborative action, people like Donna Mae and Carl just won't get the help they need.