A life-saving collaboration between parents and a harm reduction program.
Learn to Cope is a support group for parents and family members dealing with a loved one addicted to heroin, Oxycontin and other drugs. Joanne Peterson founded Learn to Cope in 2004 in Massachusetts, with a small group of parents when her own son became addicted to opiates. What started then as a single peer-to-peer support group in Randolph, Massachusetts, has grown to include nearly 3,000 members registered nationally. There are chapters in Brockton, Gloucester, Lowell, and Salem. New chapters are planned for Quincy and at Massachusetts General Hospital in Boston. While the cornerstone of Learn to Cope remains the weekly support meetings, the non-profit has become a national model for addiction treatment and prevention programming. Learn to Cope also maintains a private online message board for parents and other family members, along with a resource guide and other information about substance use at http://www.learn2cope.org
In 2005, outreach workers from a local needle exchange program attended a community forum about opiate use in a Boston suburb, where they heard Joanne speak about Learn to Cope. They approached Joanne after the forum and talked, and learned that she was interested in getting information about overdose prevention and other harm reduction programs. Joanne had recently heard about the naloxone distribution pilots in Massachusetts and written an OpEd in her local newspaper about the huge number of overdose deaths in her community, asking why parents did not have access to this life-saving drug. The fact that a parent was interested in working with harm reduction programs was exciting for the outreach workers and they were very interested in doing what they could with Joanne. The needle exchange workers passed this information on to Mary Wheeler, who was working at the harm reduction program in an area of Massachusetts where Learn to Cope held meetings. Mary and Joanne connected, and they have forged a longstanding collaboration that has grown over the years.
Mary’s program, Healthy Streets (part of CAB Health and Recovery, now Northeast Behavioral Health), provided overdose prevention and naloxone distribution as part of their Not One More Anonymous Death (NOMAD) project. Mary and NOMAD workers first offered support to Learn to Cope families around substance abuse as well as help getting their loved ones into treatment programs.
As the relationship between the program and Learn to Cope grew, they began to provide more services and education to the parents’ group. Over the last 6 years NOMAD/Healthy Streets has collaborated with the Learn to Cope family groups in the following ways:
- Providing education around Hepatitis C transmission, prevention and treatment; accessing substance abuse treatment and the realities of the process as a non-using family member and; recognizing substance use
- Providing naloxone training and enrollment at Learn to Cope support group meetings
- Trained 12 parents from across Eastern MA to become approved Opioid Overdose Trainers. They have since begun distributing naloxone in their respective groups
- Presented at the “Youth At Risk” conference about working with parents of drug users, presented with 2 Learn to Cope group members
- Provided technical assistance to families who were in LTC but lost their loved one to a fatal overdose start their own support group, GRASP North Shore. Currently, staff meets to provide TA every 3 months or as needed via email and phone.
- Worked for 6 years with the Learn to Cope on the Lynn, MA Overdose Vigil. Several parents have spoken and they provide outreach for the event.
One of the unique things about this collaboration between a harm reduction program and a parents’ group, was that Joanne never asked the harm reduction programs to hold back any information from families, no matter how uncomfortable it was for some to hear at first. Harm reduction programs, like needle exchange, can be difficult for some parents to accept at first, with time and respectfullydelivered information, many parents have come to accept and even advocate for harm reduction programs.As Mary states: “From the start, Joanne never requested we keep needle exchange or the realities of drug use a secret. The harm reduction programs that work with Learn to Cope have been very clear that families no longer need palatable information they need the truth even if it is uncomfortable for some to hear. Joanne was a remarkable advocate for harm reduction. Without her belief in the philosophy we would most likely not be as involved in LTC as we are. Our program is able to bring to the table a lot of the realities of drug use that families are generally shielded from allowing them to have a full spectrum of accurate and useful information. Families often times will call the program and ask us questions about treatment, come to the program with their loved ones to access treatment or work with us while a loved one is incarcerated to secure treatment upon their release.”
While Joanne was supportive of harm reduction programs from the start, other parents continue to struggle with the concepts, especially around needle exchange and safer drug use information. However, parents tend to be extremely supportive of overdose prevention efforts and naloxone distribution. The most important thing for harm reduction programs to remember when working with families is to tailor their information and approach to their audience and to be sensitive to parents’ needs. For example, Joanne suggests that overdose prevention trainings focus on overdose risk factors, signs and symptoms, recognizing overdose and responding, including rescue breathing and naloxone administration. In-depth discussion of safer drug use, or overdose prevention strategies for the drug user can be triggering, and not information that parents feel is necessary for them to know. Instead, the trainers could provide information on how their loved one can access this information for themselves from their local harm reduction program.
Joanne suggests that parents that want to learn more about naloxone distribution contact their local department of public health and ask where they can get access to naloxone, and if there are no local programs, why not? Programs that offer naloxone can reach families by contacting local family groups or by running OpEds or outreach advertisements in local media. Programs should ensure that the trainings are confidential and they should offer to come to the parents, instead of having parents visit a needle exchange or drop-in center.
To date, there have been countless lives saved by trained family members as a result of this collaboration. In December 2011 alone, a father saved his daughter and a mother saved her son. Other overdoses that have been reversed included a grandmother saving her grandchild and a mom saving her son’s friend.