June 2005

We are a new family organization focused on supporting, educating, and advocating with families of children and youth at risk for or who have serious emotional disturbance in a currently funded system of care community. Our organization is in the midst of creating a toll-free helpline for families and professionals calling with mental health and other related concerns. I was recently hired as the part-time family coordinator. In addition to fielding calls in the office, I also help to recruit additional family member volunteers who are willing to field helpline calls. Can you suggest any strategies or protocols to help us implement our toll-free helpline?

Telephone support is an invaluable resource for families of children with serious emotional disturbance that many family organizations across states, tribes, and territories provide as a component of systems of care. I encourage you to seek out other family organizations that have successfully implemented a toll-free helpline to learn their strategies and protocols. Networking with peers is how most of us have learned and gained valuable information. In response to your question, I have put together a few tips and approaches based on my experience that you may want to incorporate into your program.

First, your organization may want to think about how it will advertise and market your toll-free helpline to connect with families, agencies, professionals, and other concerned individuals. It was helpful for the organization I was involved with to build relationships with the child and family serving agencies, schools, doctor offices and clinics, and other advocacy and support organizations. In our more urban communities we reached out to neighborhood associations and community centers. It was important for us to connect with well-respected cultural leaders who guided and introduced us to additional families. Our organization developed brochures, flyers, and posters about our organization and toll-free helpline and provided many copies to all of our partners to post in their offices and share with families. We made presentations to many frontline staff in the diverse child and family agencies. We also created press releases in order to share information in newspapers and on cable television about our new toll-free helpline. We were very fortunate to find an advertisement firm willing to help us develop our materials pro-bono; the firm even donated all of the production and copies of materials, which saved our organization over $10,000 Once you have advertised and spread the word, it is important that you have family leaders lined up on the other end of the phone to be available when the calls come in. Individuals are discouraged when they get an answering machine.

Your organization will need to have a clear protocol for speaking to providers and referral sources if they are calling on behalf of a child and family. Referral sources that call directly into your organization need to supply a release form that provides written permission to communicate with your organization. Many times providers will call and want to share information with you; please stop them and ask for release information before continuing the call. I always encourage organizations to develop a model that promotes getting the family to call directly to the organization, and I discourage family leaders having conversations with providers without the family present. One strategy to address this issue is to work with the provider to see if they can encourage the caregiver to call on their own or to do three-way calling so that all parties involved are present. It is just as important for your organization to speak to individuals on behalf of a family as it is to have a signed release from the family. In my experience, providers were very receptive to working this way, and our organization ended up having almost as many providers calling in to seek information and support on how to engage families.

It is important to have some additional protocols in place when operating a toll-free helpline such as:

•  Greet the caller warmly and use strategies to engage in building trust and establishing an ongoing relationship between your organization and the individual.

•  Share the mission of your organization, the current services and events available, and disclose that you are a family member.

•  Share your organization's confidentiality policy and participant protections.

•  Find out the key concerns an individual is calling to address and repeat back the individual's shared concerns. Active listening skills will go a long way.

•  Be prepared for crisis or emergency related needs and have a clear protocol for dealing with the crisis or emergency. Have emergency numbers accessible such as 911, mental health emergency lines, child abuse hotlines, and suicide hotlines. All staff should be trained on what constitutes a red flag.

•  Let the families share their experiences and what they are going through. Affirm their feelings and emotions to help them find acceptance.

•  Have a basic intake form readily available to help you record information such as demographics of the caregiver and the child; primary reason for calling; diagnosis; strengths and services needed or currently being utilized by the child and family across all life domains (safety, basic needs, residence, medical, psychological, behavioral, mental health, legal, educational, vocational, family interactions, cultural or spiritual, and self); and also what you will do as a follow-up to the call.

•  Support the family emotionally. Share new knowledge and information in the identified areas of need. Affirm the family's strengths and encourage them to build off of these strengths. Provide options for where they can seek additional services and supports in your organization or in the community. The goal is always to help the family become their own self advocate and to empower them to make their own informed decisions.

•  Ask the family member how he/she is taking care of him/herself, and support him/her by identifying ways to continue to take care of him/herself.

•  Let the families know how much your organization cares about them. Let the family know that you would like to hear back from them with updates. Also communicate that they are welcome to call back if they have additional questions or needs. Ask if they would like to be on a mailing list to receive information about upcoming events and newsletters.

•  Send out a new family packet to all new families who call in with information about your organization and other community resources that may be helpful. It is great to have literature accessible in the office that can be shared in packets as needed.

Family organizations receive many requests for family leaders to attend families' individualized education planning meetings and/or child and family team care planning meetings with them as support or to help them advocate for their child and family service needs. If your organization has limited capacity, such as only one part-time office person, your organization needs to examine its ability to take on this additional new service or support before agreeing to go to meetings with families. My experience has taught me that new family organizations try to deliver this service before they have the capacity. These organizations end up needing to regroup and focus on what it will take to develop this added service component and to find additional funding support to make it a reality.

If you want to recruit family volunteers to staff the phone lines, it is also important to develop a training for them. Establish good policies and procedures and make sure to create a volunteer agreement that the volunteer signs. Remember as you recruit family volunteers that they are not independent in their approaches; rather, they represent the organization, and your organization should ensure that volunteers embrace your principles, philosophies, and practices. I find that having a new family volunteer shadow the helpline staff person is a great learning experience, and I have had all new staff I have hired shadow phone support staff before taking on the lead responsibility. It is important for family volunteers to receive ongoing supervision and continued learning opportunities.

Current telephone technology allows that your organization phone number be transferred to a family volunteer's home to field calls. This has been especially helpful in rural communities in which family leaders want to volunteer to answer helpline calls, but cannot travel the distance to do so in a central office.

I hope you find this information helpful. If any family organization or peer support programs have additional information about telephone support and implementing a toll-free helpline to share with our readers, we invite you to send that information to lisaconlan2@aol.com.