Support for Individuals and Families

Support for Individuals and Families

Support for individuals and families takes many forms. The forerunners of today's advocacy organizations got their beginnings as support groups of various kinds, whether assisting new immigrants in the logistics of settling in their adoptive country or helping individuals cope with disease. Today's advocacy organization can be a sophisticated organization, involved in everything from developing research protocols to midwifing legislation, but it takes its mandate from the same place as the most humble support group: ensuring that individuals and families with a particular trait do not feel that they are alone.

Support can involve education and advocacy, but in this section, we'll focus on direct support to individuals and families. At its most basic, a support group provides a central point of contact for individuals and families united by a common interest. It provides concrete proof that an individual is not alone. It can also provide a clearinghouse for information or updates relevant to an interest.

Your organization's support activities can include:

• Placing information packets with providers likely to be a first point of contact for affected individuals and families, and otherwise advertising your existence
• Connecting individuals or families with "mentor" members who can help them acclimate to new information or new tasks
• Holding regular meetings, in person or online, where individuals and family members can share information
• Maintaining a contact list of members
• Publishing a newsletter
• Maintaining a telephone hotline
• Maintaining an electronic mailing list
• Holding periodic events where individuals and families can relax and socialize, like summer picnics or winter holiday parties

Support, of course, is not just making contact and getting basic information out. It's an ongoing process, whose scope and specifics change with the changing needs of membership. Where a newly diagnosed person may be hungry for basic information, a family that has integrated the care and support required for an affected family member may wish to just dip into a community from time to time, to socialize with others that understand but not necessarily focus directly on the condition.

In fact, support functions are essentially "networking" activities. In networking, you keep track of who you know and link yourself or others with people who can help you (or whom you can help in return). People sometimes think of networking as something they have to do to get a job or something they do on the job in order to "get visibility" or preserve options at the workplace. These are the same things you'll need to do for your organization—and help your members do for each other.

As mentioned above, there are several ways to ensure community members have means to obtain answers to their inquires as well as to share information. While platforms such as Listservs may be useful, another possibility for advocacy organizations is to set up a Community Forum.

Connie Lee

Angioma Alliance

“We have always used a bulletin board format we call a Community Forum, but our forum has an active moderator model that could be useful. We have four (and sometimes five) active moderators. They guarantee a question will get four or more responses because they will each post an answer if no other community member does. They are also charged with helping members find the most relevant historical discussions and with tagging other community members who could contribute to a thread. I think a forum member (new or old) asking a question is about so much more than simply seeking information. If they are like me, they are using questions to form or reinforce connections to the community. The one downside to our active moderator model, as compared to the use of a listserv, is the volume of email. On the bulletin board, people can skip a thread if they aren't interested - no delete key needed.”

A Snapshot of Support Offerings: CFC Family Network

Brenda Conger, Director

CFC Family Network, Inc.

"It's hard to express the feeling I had the first time I talked to another parent with a CFC syndrome child. It was like coming home.

Our first CFC Family Network, Inc., newsletter was distributed in 1999.

We have come a long way since that time and our membership has grown by leaps and bounds. We recently mailed the 2000 Fall Edition of our newsletter, which was sent to over 75 families from around the world.

The CFC Syndrome Support Group, Inc., was founded in 1991 by Nancy and John Carlson and is now run by Brenda and Clifford Conger. We offer support to families and professionals whose lives have been touched by CFC syndrome.

We also offer a "Parent Packet" that contains many pages of information relative to the various aspects of CFC. Other parents have written letters along with our valuable organization newsletters. Helpful agencies are also included in this mailing.

We are a networking group. If members need to talk to someone, they can give me a call (evenings or weekends), or feel free to call anyone on our contact list. We would be happy to talk with you.

We also operate an electronic mailing list and we encourage members to subscribe. There is no fee for this service, and you get to exchange information with others in the group whose lives are affected by CFC syndrome.

During the first three years of our child's life, I had always dreamed of finding other families who had a child like ours. In addition to uncovering the diagnosis, I was also desperate to talk to another family about the many medical and developmental issues. Today I can truly say I have made some wonderful new friends from all over the world."

Parent Portfolio Notebook

Increasingly, parents and other family members are being asked to shape are create better systems of services for their special needs children. The Parent Portfolio Notebook is a dynamic, record-keeping system designed by parents and their professional partners to assist parents in describing their qualifications to (1) serve on Governing Boards, Advisory Boards, Task Forces, workgroups, and other policymaking bodies or (2) apply for paid positions in the disability service system, school districts, and other related fields by:

• recording and organizing their talents and skills, educational and training experiences
• providing a format to document their life experiences

As a parent or family member, qualifications don't come from credentials and degrees. They come from knowledge of your child, trying to get services for your child, attending individualized planning meetings, facilitating your child's involvement in the community, advocating for your child, teaching others about your child's disability, attending workshops, and your quest for knowledge. You are an expert. The Parent Portfolio Notebook will help you describe your expertise to others.

On April 21, 2010, the Family Resource Centers Network of California (FRCNC) and Parent Portfolio Notebook authors Jean Hansen and Christy Cole presented the interactive webinar: PARENT PORTFOLIO NOTEBOOK: Turning Life Experiences into Credentials to provide you with an introduction to the Parent Portfolio Notebook so that you can use it yourself or share the information with the parents with whom you work.

More information can be found on the FRCNC website.

Summertime with the Family

Summer is a time for camps and vacations, so make the most of it!

Families of individuals with genetic conditions and special needs often need to plan ahead to make sure their vacations are relaxing for everyone. Here are a few great resources you may want to check out:

• Camps for Children with Special Needs
• Traveling with Special Needs Children - Tips and Advice

Add your own tips or resources to help families have a fun and relaxing summer.

Military Families

Military families encounter unique challenges because of the transient nature of their career. They often move frequently and need more flexible networks of care. This is especially important when the family has a child with special needs. The Center for Parent Information & Resources has collected several resources that accommodate the needs of military families with special needs children.

Guardianship Options

Some people might be interested in alternatives to guardianship. Different organizations provide a one page document with these options, so here is what we found so far:

• New Mexico Developmental Disabilities Planning Council

• Lawyers.com

Internal Links

• Autopsies and Tissue Collection
• Best Practices
• Conferences, Workshops, and Meetings for Affected Individuals
• Connecting Individuals
• Dealing with Death
• Internet Services
  • Mailing Lists
  • Websites, Chat Rooms, and Newsgroups
• Phone Services
• Protecting Member Privacy
• Setting Up A National Conference
• Youth to Adult Transition Issues