On an unseasonably warm day in December 1964, 19-year-old Dick Elhardt, of Roseville, Minn., and his two best friends went for a joyride in his friends’ Austin Healy. It was the day before Elhardt was to be drafted, and they wanted to have some fun before he left for Vietnam.
The three friends were clean and sober when the driver overshot a curve, sending the trio over an embankment. The sports car landed upside down, killing the driver and pinning Elhardt half in and half out of the vehicle as it burst into flames. His other friend, who was thrown through the windshield, was able to pull Elhardt out from under the car and save his life.
Within days, however, gangrene set in and both of Elhardt’s legs were amputated above the knee; doctors said he received the worst third-degree burns they had ever seen. Since then, he has battled a cycle of substance abuse–pain medication, marijuana and alcohol–trying to mask the phantom pains in his legs, pain from his prosthetics and pain in his shoulders and wrists from using walking canes.
Numbers of Abusers
Scarce are the comprehensive studies or statistics on substance abuse among the disabled population–in fact the professionals we spoke with knew of none–though some rehabilitation facilities have surveyed injured individuals about their alcohol intake pre- and post-injury.
According to Wright State University’s Substance Abuse Resources and Disability Issues program in Dayton, Ohio, alcohol abuse rates for Americans with disabilities are twice as high as for those with no disability. John de Miranda, executive director of the National Association on Alcohol, Drugs and Disability of San Mateo, Calif., suggests that of the over 50 million Americans with disabilities, as many as 15 to 20 percent have a coexisting drug or alcohol problem–compared to the 10 to 12 percent of persons with substance abuse problems in the general population.
“Unfortunately, nobody has done a study to say there’s a general, robust percentage or number of people who have a particular substance disorder and a particular disability,” says Timothy Elliott, professor of the department of psychology, University of Alabama, Birmingham.
In addition to compromising a person’s health or rehab progress, using alcohol or drugs while disabled undermines the bodily system. It can contribute to or cause pressure sores, liver damage and broken bones from falls. It also creates depression, saps your strength and makes you generally less engaging and independent.
But possibly the most devastating effects on individuals with coexisting disabilities derive from the attitudes of those who surround them.
Elliott warns of doctors prescribing medicines for pain or muscle spasms without considering the patient’s substance patterns, putting them at risk for a variety of problems. Many treatment facilities go only as far as following ADA guidelines to be architecturally accessible but lack an “accessible” attitude whereby the chance for acceptance into and success in a recovery program is lowered. And when family, friends or medical experts hold attitudes such as “If I were like this, I’d drink or do drugs, too,” or “They don’t have much to enjoy, so why not let them have fun?” it only encourages, coddles, enables or leads to acceptance of substance abuse problems.
Elhardt’s recovery has been a seesaw of pain management and addiction, and the worst withdrawal side effects came from his pain medication, which included methadone treatment.
After the accident, Elhardt received morphine during his six months’ stay in the hospital. At home, he continued taking pain medication–sometimes quadrupling the dose–until it stopped relieving pain caused by prosthetics and phantom pain. To this day, his brain and nerves are still reacting to the burn trauma.
“After the hospital, I could get whatever medication I needed,” he says. “But within a couple of years my doctor said, ‘You just can’t take any more.'”
That’s when Elhardt, married with two sons, discovered that marijuana would relieve his pain. He smoked about a joint a day for 10 to 12 years until a newspaper article caught his eye.
“The article said that one Manhattan drink had the same effect of what in those days they called hypos,” he says. “I thought ‘Oh, wow,’ that’d be cheaper and easier to get. It worked pretty good.”
His initial habit was one or two Manhattans a night–a Manhattan is essentially a martini made with whiskey. It progressed to three and four a night, then to drinking until he passed out. By the mid-1980s it wasn’t about relieving pain anymore; all he cared about was getting the next drink. By the early 1990s he needed a drink in the morning before work to stop “the shakes” and “clear his head.”
“In 1993 I was sick and tired of being sick and tired and checked myself into a hospital detox,” Elhardt says. “I stayed sober for six months, then started drinking again. I justified it by saying it helped the pain.”
In 1995 Elhardt went through Hazelden’s rehab program in Center City, Minn., and has been sober since. However, he recently went back for treatment for pain meds abuse.
“I had surgery on both my shoulders,” Elhardt says. “After the last one, the doctor sent me home the next day. I use my shoulders a lot to transfer from my wheelchair; the surgeries were painful enough, but lifting myself made it worse.”
In order to get pain medicine, because of his past use Elhardt signed a contract with his doctor stating that he would only use what was prescribed; he wouldn’t go to other docs for prescriptions; and he would only use one drugstore to fill his prescription. He took Vicodin, then OxyContin, and then was put on Methadone and Dilaudid. He would quadruple his dosage for a couple of weeks, then cut back to less than prescribed to coast until he could get a refill. It became a full-blown addiction over a three-year period.
“Your body actually ‘creates pain’ to get more of the medication,” he says. “I’m an addict. I just can’t drink or take any pain medicine ever again.”
In September 2004 he again checked himself into Hazelden. He says that detoxing from the Methadone was worse than any other substance; he was told that it’s harder than getting off heroin.
“I only slept four hours the first week in Hazelden,” he says. “It took a couple of months before I could get to sleep. I was thrashing in bed, I experienced chills and couldn’t get warm, I had anxiety attacks; the drug gets so deep into your tissue and bones, it takes that long to leave your body.”
Changing the System
At 25, Deborah Larson of Allston, Mass., had finished her master’s degree and was beginning to work on her doctorate in physiological psychology. One night in his sleep, her father had a massive heart attack and died. Within 11 months, her mother also died of a heart attack. Larson, an only child, felt lonely and lost and started to drink and do drugs. Eventually, her abuse caused an epileptic seizure and she was brought to a hospital where she had a stroke, resulting in a brain injury.
After Larson had another epileptic seizure due to drinking alcohol while taking antiseizure medication, she sought help at the Granada House in Allston. Despite an obstacle to gaining admittance, Larson was accepted as an inpatient resident because of the grace of its executive director, Tom Reardon (now deceased).
“Granada was not necessarily a disabled-person provider,” Larson explains. “You had to pass a test: You had to get out of the building within a matter of seconds. Despite the fact that I could hardly walk and couldn’t read and couldn’t get out in a matter of seconds, Tom took me anyway.”
Four years later and well into recovery, Larson became executive director of the facility and has since become an advocate for changing attitudes and programs to create accessible treatment facilities where anyone can receive help. She is now 23 years sober.
“In most states–aside from Massachusetts, New Jersey, California, Arizona and Wisconsin–there’s not treatment available for people who are disabled, including big treatment centers like Hazelden, which became architecturally accessible just two years ago,” Larson said. “The Rehabilitation Act was passed in the 1970s, ADA in 1990, and still they’re breaking the law by being inaccessible; this includes 99 percent of most public substance abuse treatment facilities.”
According to Larson, local detox centers are more likely than residential longterm treatment or recovery homes to accept people with disabilities. She said in Massachusetts there are 52 treatment centers, 90 percent of which are architecturally accessible, yet Granada House treats 50 percent of the state’s disabled residents. Larson cites reasons of fear, laziness and non-enforcement of federal law on legislative and state levels.
“If a treatment facility were to say, ‘I’m not going to take you because you’re black,’ it would hit the newspapers, and the NAACP and everybody would be outraged,” Larson says. “We are [also] covered by civil rights laws; we are covered legally just the way an African-American is. People should be just as outraged, but they are not.”
Getting Help When Needed
Beyond architectural barriers, most treatment facilities do not train staff to ask the right questions during an initial phone interview with a disabled person seeking help; nor do they eliminate staff attitudinal problems or discriminatory behavior.
Elhardt suggests speaking directly to a counselor instead of a call center or intake technician when calling rehab facilities. But, as Larson says, if callers are already reluctant to get treatment, any ignorance or misinformation over the phone could stop them dead in their tracks from seeking help. Jo Ann Ford, assistant director of Wright State University’s SARDI warned that many inpatient programs expect attendees to do “chores” such as housekeeping. They turn away individuals who can’t comply. She added that some centers turn away people with quadriplegia for fear they will have emergency issues.
“Standard treatment facilities are physically, cognitively and financially inaccessible; people [needing treatment] don’t have time for it, they’re trying to get back to work or get through their day,” says Chuck Bombardier, rehabilitation psychologist with Harborview Medical Center, Department of Rehabilitation Medicine, Seattle. “We should provide substance abuse treatment and help where people are, not expect them to go get treatment.”
Because of recent federal and state budget cuts, many social services–especially in the alcohol and drug treatment provider communities–are underfunded and resource-poor. Add to that the ignorant or fear-based attitudes and the fact that provider facilities tend to be in older buildings that are not compliant with state or federal accessibility laws, and you’ve got more hurdles to jump than just picking up the phone to make that first call for help.
“In terms of special populations that are targeted by the alcohol and drug field, I think disability is right at the bottom of the list,” says de Miranda. “We have good programs for ethnic, racial and cultural minorities, we have programs for women, adolescents and sexual minorities. But the alcohol and drug field sees the disability community as a very low priority, partly because this is not viewed as an important issue for the disability community.
“The disability community and its leadership tend to focus on other issues, such as attendant care, transportation and employment,” he adds. “Holding up another stigmatizing condition like alcohol or drug problems tends not to happen within the disability community.”
Many people believe the longterm solution is not to create separate programs for those who need accommodations, but for local disability and rehabilitation organizations to work with substance abuse providers to make their programs more accessible.
De Miranda is also concerned about rehab centers ignoring a patient’s substance abuse during trauma rehabilitation. When the thrust of rehab is getting the body working again–and no attention is paid to chemical abuse issues–holistic rehabilitation is compromised.
“While working with Palo Alto’s VA center, I found that [physical] rehab centers usually focused on the bones, the blood, and the muscle, and not particularly on substance abuse,” says de Miranda. “In fact, they often are eager to get the patient out into the community to resume a ‘normal life.’ Sometimes that involves going back to old habits.”
Model Support Group
Twenty-two years ago, Dennis Straw and Sharon Schaschl started a substance abuse rehab program for people with disabilities at the Sister Kenny Rehabilitation Institute of Abbott Northwestern Hospital, Minneapolis. The institute ran the rehab program for 10 years until funding was cut. Schaschl, who still facilitates the group (now funded by Metropolitan Center for Independent Living), says one reason the group is a success is because as a paraplegic, Straw, who passed away in 2002, was able to relate to the group.
Schaschl said part of recovery is grieving losses such as a job or relationship. For a person with a disability, that also includes loss of self-esteem, loss of physical ability and change in body image. Schaschl suggests seeking a support system at a facility that either has a counselor or another person in recovery who has a disability or who is at least savvy about disability issues.
“I think the big attitudinal piece is always the most difficult,” Schaschl says. “Dennis and I would call programs and say, ‘Do you work with people with disabilities?’ The answer would usually be, ‘Oh, yes, we have grab bars in the bathroom.’
“We’d say, ‘But do you address the disability?’ and they would say ‘No, we would prefer that they not talk about that in group.’ But if you don’t deal with the disability, it becomes your ticket for going back to using again.” Schaschl and Straw’s group still meets once a week. The member’s disabilities are varied but they believe that dealing with substance abuse is secondary to first acknowledging and/or accepting a physical or cognitive disability.
Group member Elhardt said he learned through this group how to address the disability piece of the equation–why he was drinking–and that helped him learn to manage his pain without drinking. He said he had counselors at Hazelden who dealt with some of the problems associated with a physical disability, but it was Schaschl’s group that really got him to accept his disability.
“Talking about my physical disability was a big piece of my recovery,” Elhardt says. “This group is like meeting with eight counselors because they all have a disability and they’ve all been through it.” Elhardt now uses relaxation techniques, swimming, massage and biofeedback for pain management and receives steroid shots to block nerves from sending phantom signals to his legs.
Unfortunately, groups such as Schaschl’s are scarce. And, some might argue that segregating individuals with disabilities is not the answer. Regardless, it will take ignoring the stigma of substance abuse and a lot of advocacy in order to lower the numbers of individuals with disabilities who have a co-existing disability of substance abuse.
“We’ve got to hold our elected officials accountable, and the disabled community has to get it together with the substance abuse community,” Larson says. “Substance abuse is a disability and the disabled community has to stand up for their brothers and sisters and vice versa. We are being discriminated against and everyone should be outraged.”
Many local hospitals have detox centers or intervention programs. If unable to locate a suitable treatment facility, call your nearest independent living center and ask for a referral. To find the CIL nearest you, contact the National Council on Independent Living, 877/525-3400; firstname.lastname@example.org, www.ncil.org
Substance Abuse Resources and Disability Issues, Wright State University, Dayton, Ohio, 937/775-1484; www.med.wright.edu/citar/sardi.
National Association on Alcohol, Drugs and Disability, San Mateo, Calif., 651/578-8047; www.naadd.org.
Substance Abuse Rehabilitation Harborview Medical Center, Department of Rehabilitation Medicine, Seattle, Wash., 206/543-3600; www.depts.washington.edu/rehab.
Sharon Schaschl’s Group (formerly with the Sister Kenny Rehabilitation Institute of Abbott Northwestern Hospital, Minneapolis, Minn., now funded by Metropolitan Center for Independent Living), 651/646-8342.
Hazelden, 800/257-7810; www.hazelden.org.
Betty Ford Center, 800/854-9211; www.bettyfordcenter.org.
Granada House, Allston, Mass., 617/254-2923; www.granadahouse.org
Alcohol Patterns and Injuries
“If you look at people who have acquired disabilities such as SCI, TBI or amputation, we found that the vast majority of people who have an alcohol abuse problem after their injury had an alcohol abuse problem before their injury,” says Chuck Bombardier, rehabilitation psychologist with Harborview Medical Center, Department of Rehabilitation Medicine, Seattle.
According to Bombardier’s paper, “Management of Substance Abuse after Trauma,” alcohol intoxication is the underlying cause of nearly half of traumatic injuries in the United States. Large-scale survey data supports that 75 percent of intoxicated trauma patients admitted a prior history of alcohol-related problems while 26 percent of nonintoxicated trauma patients admitted to significant pre-injury alcohol problems. Surveys of persons with TBI or SCI show that drinking declines during the months immediately following injury (during physical rehab) followed by increased drinking during the first and second years after injury.
In one study by Timothy Elliott, professor of the department of psychology, University of Alabama Birmingham, people who reported a heavy alcohol intake prior to SCI were three to four times more likely to develop a pressure sore in the first three years after their injury versus people who had no significant alcohol abuse. He believes this may suggest that these individuals disregard their health prior to injury, which carries over to their personal health after injury: they may neglect it, ignore it, overlook it, not engage in wellness programs or take risks.
Elliott cites a recently published report by Bombardier that states 35 to 49 percent of people with recent-onset SCI have shown significant self-reported alcohol related problems, and 35 to 40 percent of those reporting stated that alcohol may have contributed in part to the cause of their injury.
“But, alcohol use is implicated in a lot of things that get people into the ER,” Elliott warns. “I once read that most of the people in this country who report to the ER with venomous snake bites have significant blood-alcohol levels. People get in an altered consciousness and they get in trouble for all sorts of reasons. If you’re using substances, don’t pick up a gun, don’t start a fight and don’t play with snakes.”