Topics - Parental Illness
Support Programs for Children, Youth and Families
Cancer Care, Inc. located in New York provides information and support to individuals and families coping with cancer. Resources include an innovative telephone support group for adolescents and a wealth of materials on helping children understand and cope with cancer in their family. For more information, contact the National Office at 275 7th Avenue, New York, NY 10001, phone (212) 221-3300, fax (212) 719-0263.
Children and Parents Together (CAPT) in Commack, New York provides nursery and preschool support to children of parents with mental illness, and support groups for their parents. CAPT takes a flexible approach to “meeting families where they’re at,” and a team approach to supporting parents through psychoeducation and skills training. Staff focus on relationship development issues. Children are encouraged to develop age-appropriate language, emotional expression, behavior management, and social skills. Art and music are key elements in the classroom environment. For additional information contact Mary Sidoti at Children and Parents Together, Family Service League of Suffolk County, Inc., 38 Park Avenue, Bayshore, NY 11706, phone (631) 666-2149.
The Children’s Program at the University of Virginia’s Cancer Center began in the summer of 1996 when the Cancer Center offered Parent’s Night Out. Parent’s Night Out, provided free children’s activities for children at the center so that adult patients could have some time for themselves. Since its inception, the Children’s Program has expanded its services. Families receive a patient’s resource packet that contains information about coping with cancer, services provided by the center and resources in the community for children and families. Families also have access to books and videos. For more information about the Children’s Program, please call (804) 924-2477.
The Blum Resource Center and its satellite resource rooms at Dana-Farber Cancer Institute and Brigham and Women’s Hospital offers books, brochures, computers, videotapes, and audiotapes to help patients and their families locate information and support. The Blum Patient and Family Resource Center provides support to children who have a parent with cancer through the Backpack and Fanny Pack Give-Away Project. Backpacks filled with toys, rubber stamps and stuffed animals are given to boys and girls between the ages of 4 and 12 years old. Teenagers receive fanny packs, filled with age-appropriate items like rulers and sunglasses. Each pack has jokes “just 4 kids by kids” and a suggestion sheet for children when a parent has cancer. Parents receive a folder along with the give away which contains information that helps parents discuss a cancer diagnosis and treatment with their child. Also included is a video, Kids Tell Kids, produced by Cancervive. The parent folder also includes Internet sites for families dealing with cancer and a suggested list of materials for young children whose parents have cancer.
The Emerson-Davis Family Development Center, located in Brooklyn, New York, is home to 16 homeless single parent families with a mental illnessand their young children. It is one program of many operated by the Institute for Community Living, where a guiding principle is that “everyperson with a disability has the right to live in decent and safe community housing of his/her choice.” The major portion of the program is located in a four-story apartment building, which includes apartments for single adults as well as families, indoor and outdoor play areas for children, group meeting space, and a satellite office of the child guidance clinic. There are 22 apartments available for single parents interested in reuniting with their kids. These parents are offered parent readiness training. For families ready for the next stage of independent living, 8 apartments, scattered in local neighborhoods, are currently available. Staff, available 24 hours a day, provide counseling and coordination of mental health services; on site crisis intervention; coordination of adult and child health care; prevocational and supported employment skills training; coordination of special needs, education services for adults and children; parenting skills assessment and training; child care and after-school services for children including tutoring and therapy; substance abuse counseling; assistance and training in maximizing entitlements; and rehabilitation skills training for independent living. Residents can access an array of additional support services available through the larger Institute for Community Living agency. Additional information may be obtained from Harvey Lieberman, Ph.D., Institute for Community Living, Inc., 40 Rector Street, New York, NY 10006, (212) 385-3030, ext. 112.
Family Connections at Dana-Farber Cancer
Family Connections is an interdisciplinary group of social workers, nurses, patients, and other staff at Dana-Farber Cancer Institute whose mission is to identify and respond to the needs of adult cancer patients who are parents and their children. The Program uses a parent guidance model to help parents talk with their children about cancer, and provides resources to help facilitate children’s expression of questions and feelings, and assist both parents and children in coping with a cancer diagnosis. Examples of some of the things offered through the program are 1) kidpacks which are given to children and teens and contain things such as cancer information, fun items, and other useful resource information; 2) parent information binders, designed to explain and enhance the kidpacks; and 3) a teen-focused event which provides the opportunity for teenaged children of adults with cancer to meet each other, share their stories, and offer each other support. For more information about Family Connections, contact Dana-Farber support groups at (617) 632-4319.
Family Support Services/PACE (Parents, Advocacy, Coordination and Education) in Iowa City, Iowa, is a community mental health program that strives to prevent and reduce child welfare involvement and unplanned hospitalizations for families in which parents have mental illness. Treatment and recovery is achieved through engaging families in ongoing and supportive relationships. Staff work with families towards developing problem solving techniques, counseling and the education of both parents and children regarding mental illness. Family Support Services/PACE aims to increase the quality of life for families while building a bridge between mental health services and other service delivery systems. For additional information contact Kit Crane, Mid-Eastern Iowa Community Mental Health Center, 507 East College, Iowa City, Iowa 52240, phone (319) 338-5293.
The “Friends” Program. The Ohio Department of Mental Health developed this statewide network of support groups and retreats for children whose parents have a mental illness in 1987. This is a cooperative effort with public psychiatric hospitals, mental health boards and agencies and alliances for the mentally ill. The programs provide education, socialization and support for children under the age of 18 to learn about and discuss living with parental mental illness. The contact person is Helen Cain Jackson, MSW, LISW, Administrator for Prevention Initiatives - ODMH, Office of Children’s Services and Prevention, 30 E. Broad, 8 th Floor, Columbus, Ohio 43266-3430, phone (614) 466-1195/1984. Additional resources include Children Whose Parents are Mentally Ill: A Forgotten Group written by Helen Cain Jackson.
In existence since 1979, the Infant-Parent Program in San Francisco provides outpatient mental health services to infants, toddlers, and their families. Their psychotherapeutic approach focuses on the parent-child relationship, and works to increase parents’ self-esteem while stressing the importance of the role of parent. Parents and children often receive treatment together. The Infant-Parent Program also offers developmental neuropsychological assessments, and can help with childcare and school planning. In addition, the Program provides yearlong medical residents’ training with over 130 graduates, many of whom continue to focus exclusively on early intervention work with infants, toddlers, and their parents. Additional information may be obtained from Betsy Wolf at San Francisco General Hospital, 1001 Potrero Ave., San Francisco, CA 94110, phone (415) 206-5270.
The Invisible Children’s Program (ICP) of the Orange County Mental Health Association in Goshen, New York embraces two guiding principles in working with parents with mental illness and their children: parents want to be the best they can be; and the act of parenting is a significant, oftentimes healing role for adults with mental illness. ICP provides a range of family-centered services, often in the home, including advocacy, information and referral, case management, crisis planning, parent support and education, respite and childcare. ICP families benefit from services offered by the larger MHA: a 24-hour on-call help line, supported housing, Compeer, Family Ties—a consumer run support group, vocational training and supported education. For more information contact Linda Norman at Orange County (NY) Mental Health Association, 20 Walker Street, Goshen, NY 10924, phone (845) 294-7411.
KidsCope is a non-profit organization whose purpose is to create and provide educational materials to help children cope with changes when a parent has cancer. For more information contact: KidsCope, 3399 Peachtree Road, Suite 2020, Atlanta, GA 30326, phone (404) 233-0001.
Kids Konnected was founded by 11 year old Jon Wagner-Holtz in 1993 after his mother was treated for breast cancer. Kids Konnected offers programs such as: monthly group meetings, summer camps, a 24-hour hotline, Teddy Bear outreach, youth leadership, and resources. Based upon the premise that when a parent is diagnosed with cancer the entire family is affected and the needs of the children must be addressed, this non-profit organization has established programs in over twenty states. For more information, please contact: Kids Konnected Corporate Office, 27071 Cabot Road, Suite 102, Laguna Hills, CA 92653, (800) 899-2866 toll free, phone (949) 582-5443, fax (949) 582-3989.
Massachusetts General Hospital’s Cancer Resource Room provides complimentary copies of the book, How to Help Children Througha Parent’s Serious Illness (see description in Books section). A topical information sheet, “Children Coping When an Adult Family Member Has Cancer,” lists books, videos, websites, and other information available in the resource room. There is a bulletin board for patients and families to post questions about communicating with children about a parent’s illness. A child psychiatrist answers the questions and posts them on the bulletin board.
National Multiple Sclerosis Society’s Knowledge is Power program invites newly diagnosed individuals to participate in an at-home six part educational series that provides current and accurate information about MS, including information on the impact of MS in the Family. Support programs geared towards children include PenPals, MS Kids Camp, and an art program. PenPals is a support group for teens that have a parent with Multiple Sclerosis, where children provide peer support to one another through writing. The Multiple Sclerosis Kids’ Camp, offered for 3-5 days in several chapters of the Multiple Sclerosis Society across the United States, gives children the opportunity to bond through participating in sporting activities. MS Through The Eyes of a Child, is an art program for children used as a therapeutic tool to help families cope with the disease. Additionally, the Society has developed a wealth of resources for children, youth and families. Informative publications include, Someone You Know has MS, by Cyrisse Jaffee, Debra Frankel, Barbara LaRoche and Patricia Dick; Plaintalk: A Booklet About MS for Families, by Sarah L. Minden and Debra Frankel, and Making Life Easier with Kids by Shelley Peterman Schwarz.
Starting Early Starting Smart is a public/private collaboration between the Substance Abuse and Mental Health Service Administration (SAMHSA) and the Casey Family Program that integrates behavioral health services addressing substance abuse prevention, substance abuse treatment, and mental health needs of families in early childhood settings that are familiar to children and families. Through the development of 12 model programs, Starting Early Starting Smart will identify best practices for improving the developmental outcomes of young children from birth to 7 years-of-age.
The Treehouse Gang is a support group for children who have a family member with cancer. The group helps children with their fears of the unknown and provides a safe place for them to discuss their feelings with other children in similar situations. For additional information about the Treehouse Gang, contact the Charles B. Eberhart Cancer Center at (404) 501-5701.