Supporting Players

It’s 4 p.m. on a Friday, and three couples in three homes are getting away for the weekend. Trained staff from United Cerebral Palsy will spend the next two days with their disabled children. For the parents, it’s their long-awaited break.

“The letters I get are incredible. ‘You saved our life.’ ‘You saved our marriage.’ ‘We haven’t been away in five years,’ ” says Ron Cohen, executive director of United Cerebral Palsy of Los Angeles and Orange Counties. “Being the parent of a severely disabled child is a 24-hour-a-day service.”

Along with family support services, parents of children with special needs must seek information and medical help. The National Institutes of Health provides “an excellent way to find out who is interested in a certain disorder and the research results,” says Julia Gordon, executive director of Mothers United for Moral Support National Parent-to-Parent Network, based in Green Bay, Wis.

Other help for the parents of disabled children ranges from day camp to assistance in starting support groups for people whose children have a rare disorder. Of the 5 million families of children and young adults with disabilities and special health care needs across the nation, more than 500,000 live in California. And there are hundreds of national and local resources to call on.

The following list will provide a start to parents who need information and support services.

INFORMATION CLEARINGHOUSES

* The National Information Center for Children and Youth With Disabilities provides callers with basic information on the subjects they request before referring them to national or state organizations that can more specifically meet their needs. The center’s particular expertise is special education law, but free information is available on a number of topics. The group has more than 50 publications that cost from $2 to $4 apiece by mail but are free online. Call (800) 695-0285 or find the center on the Internet at https://www.aed.org/nichcy.

* The Assn. of Birth Defect Children is a national nonprofit organization, begun by parents, that provides support and information for families of children with birth defects believed to have been caused by prenatal exposure to drugs, radiation, household or industrial chemicals, Agent Orange, Gulf War toxins, pesticides or other environmental agents. Its national information line answers requests for information on specific birth defects and will help parents contact support groups. Call (800) 313-2232.

* The March of Dimes serves as an information clearinghouse for parents of children with birth defects. Parents can call to obtain specific information on birth defects, connect with specialists at certain hospitals and obtain a list of support groups. Call (888) 422-2437 for local information, or the national resource center at (888) 663-4737.

* The National Institutes of Health in Bethesda, Md., houses 20 institutes dedicated to research and treatment of specific disorders. The research documentation department will send a computerized list of abstracts detailing research on specific disorders and conditions being funded through the NIH. For a free list of publications, call (301) 496-4143.

* The National Health Information Center is a free referral agency that puts people with health and medical questions in contact with one of the more than 1,200 national organizations and agencies best able to respond. Call (800) 336-4797, or find the center on the Internet, https://pc1-186.health.org.

* The National Organization for Rare Disorders has a computerized database of more than 5,000 rare disorders, each of which affects fewer than 200,000 Americans. Besides a networking program that matches families with others who have experience with the same or similar disorders, the group serves as a clearinghouse for a coalition of health agencies and support groups. The organization fields more than 100,000 questions a year and offers more than 4,000 reports, written in layman’s terms. Call (800) 999-6673 or e-mail 76703.3014@compuserve.com.

* The National Self-Help Clearinghouse will try to direct callers to a regional clearinghouse. If there is none, the agency will refer you to a national group that focuses the particular disability or problem parents are facing. Call (212) 354-8525.

* The California Self-Help and Recovery Exchange has a regional directory of about 760 support groups, many of which deal with disabilities. If a support group does not exist for the disability in question, the exchange will help start one. Call (310) 305-8878.

TOYS

* A catalog of toys for children with special needs was born three years ago after a toy help line was overwhelmed with calls from people who didn’t know what to buy their disabled young relatives. “Instead of great toys, they got socks and PJs,” says Diana Neelander, a spokeswoman for Lekotek, a national nonprofit organization based in Evanston, Ill., that provides play programs for children with special needs and serves as a resource center on choosing and adapting toys.

The “Toy Guide for Differently Abled Kids” is published every September in conjunction with Toys R Us, which sends toys to Lekotek for evaluation. If the catalog is not displayed in your local Toys R Us, ask for it at the information desk.

The Lekotek Toy Resource Help Line provides personal assistance on choosing toys. For instance, if you were buying a toy for a granddaughter with Down syndrome, you would discuss what the child can and likes to do, then receive advice on which toys the child might be successful with. The free service is underwritten by the Toy Manufacturers of America. Call (800) 366-7529.

* The American Foundation for the Blind publishes a guide to toys for children who are blind or visually impaired that gives general outlines of what to consider when selecting a toy, followed by pictures and descriptions of specific toys. Call (800) 232-5463.

LINKS TO SUPPORT

* At Comfort Connection in Garden Grove, everyone on staff is the parent of a disabled child. The family support service is for parents of children age birth to 36 months. Peer support, resource information and referrals are provided; there’s also a small library available to families and professionals. Comfort Connection serves as an umbrella organization for about 50 groups in the Orange County area that parents can be referred to. Services also are available in Spanish and Vietnamese. Call (888) 372-2229.

* The Family Focus Resource Center at Cal State Northridge provides parent mentors who speak a number of languages to support other parents of children with special needs. Information, referrals and access to a library of printed materials and videos are available. Help in starting support groups is also offered. Call (818) 677-5575.

* The Friends’ Health Connection brings together families who have children with similar illnesses or disabilities for one-to-one support. The organization tries to connect people in the same region. Matches are made based on the child’s age, health problems, personal background, symptoms and interests. Call (800) 483-7436 or find the group on the Internet, https://www.48friend.com.

* Mothers United for Moral Support Parent-to-Parent Network also matches parents with other parents of children with the same disorder. The group, which has a database of about 9,000 families from 29 countries, specializes in extremely rare conditions, and provides a list of support and informational organizations. Call (414) 336-5333.

* One in a Million Kids offers support services for parents of children with rare or undiagnosed disorders. The Seal Beach-based group provides telephone support, group meetings and helps parents with advocacy issues relating to the difficulty of finding a diagnosis. About three dozen families have been helped since the group was founded by a couple with two children who have rare chromosomal disorders. Call (310) 588-2562.

CLINICAL PROGRAMS

* The Frank D. Lanterman Regional Center in Los Angeles is one of 21 such regional centers in the state that provides information, referrals, outreach, education, training and peer support for people with disabilities and their families. Services include diagnosis, individualized planning and service coordination, early intervention / prevention services, support groups, respite and advocacy programs. Links to other groups are also provided. Call (213) 383-1300.

* Team of Advocates for Special Kids is a nonprofit corporation in Anaheim that parents of children with disabilities can turn to for help in obtaining early intervention and educational, medical or therapeutic support services. Programs include parent-to-parent support, a parent training project that enables parents to access the education, health and social service systems, and Toddler Tech classes that show parents and children ages 18 to 36 months how to use adapted toys. A central information and resource center provides literature and educational materials, technology access data and other services. Call (714) 533-8275.

* The USC University Affiliated Program at Childrens Hospital Los Angeles is one of 54 university-affiliated programs across the country. It provides clinical, educational and other services to families dealing with disabilities and points families toward other resources. One area of emphasis is prevention and early intervention. Call (213) 669-2300.

EDUCATION AND ACCESS TO TECHNOLOGY

* The office of Leo Sandoval, state director of education, handles complaints from parents regarding their child’s Individual Education Plan, mandated by state law for special needs children in public schools. The quality assurance unit exists solely to handle such complaints. Parents who are looking for clarification or guidance on special education issues can reach a consultant at a toll-free number, (800) 434-2465. Parents who want to file a complaint against a school district can call (916) 445-4632. For general information, call (916) 445-4602.

* Since federal law requires states to provide early intervention and preschool special education for children with disabilities, California provides a toll-free number to call to locate the Early Start program nearest your home. Seven of the 21 regional centers in the state that offer the program are in the Los Angeles area. Call (800) 515-2229.

* The Computer Access Center in Culver City is a nonprofit, consumer-based organization that serves the technology needs of disabled children and adults. Hardware and software are provided for evaluation and as part of a lending library. An after-school computer recreation program for children with or without disabilities is offered. Basic services are free, but the suggested membership donation is $25. Call (310) 338-1597, or e-mail cacofsmca@aol.com.

* The Special Awareness Computer Assistive Technology Center is a nonprofit group housed in space donated by Simi Valley Hospital. It serves as a learning and resource center and a training site and provides hands-on assessments, technical support, demonstrations, workshops and training to clients, their families and others. It focuses on providing computer access and education to enable people with disabilities to communicate. Call (805) 582-1881.

AFTER-SCHOOL PROGRAMS AND CAMPS

* The Easter Seal Society of Los Angeles & Orange Counties maintains an after-school program for children and teens from age 5 to 17 with disabilities at seven locations throughout the area. At Camp Respite, children and teens 5 to 18 can experience a week of camping at one of three YMCA sites in Julian and Imperial Beach. Summer day camps are held in Orange County. General recreation opportunities also are organized. Call (213) 462-2424.

* The Foundation for the Junior Blind provides a wide range of programs for blind, visually impaired and multi-disabled blind children and their families. The infant-family program offers individualized early intervention. Camp Bloomfield, on 40 acres in the Santa Monica Mountains, has specialized sessions. There also is a recreation program, residential center and special education school. Call (213) 295-4555.

* In addition to the parent respite program, United Cerebral Palsy of Los Angeles and Ventura Counties maintains an after-school program on the Westside that provides computer training. Information, referral and advocacy services also are available. Call (818) 782-2211.

MAGAZINES AND NEWSLETTERS

* Exceptional Parent magazine, with a circulation of more than 300,000, offers a wide range of support and intelligence. A recent issue of the monthly covered such topics as alternative treatments, experiences with health professionals and self-care for caregivers. The magazine’s annual resource guide, which comes out in January, is chock-full of national and disease-specific organizations. Yearly subscriptions, which include the resource guide, are $28. The resource guide and single copies can be purchased at Barnes & Noble Superstores. Call (800) 247-8080 or check out the magazine on the Internet at https://www.familyeducation.com.

* The Sibling Information Network publishes a newsletter and serves as a clearinghouse for children with developmental issues and their families. The newsletter includes a pen pal section for children who want to correspond with someone in a similar situation and a page just for children. Subscription rates are $15 for organizations or $8.50 for families. For an initial free issue, call (860) 486-4985.

INTERNET

With the advent of the Internet, the world is your clearinghouse. There’s so much information out there that it’s sometimes difficult to ferret it out. When we used a search engine and typed in “disabilities and support groups,” hundreds of links popped up. When “and children” was added to the search term, thousands more potential resources turned up. Within minutes, this list with links to many sources was found.

* Disability specific Web sites: https://www.disserv.stu.umn.edu/disability/

* Internet Disability Resources: https://www.disabilities.com/links2.html.

* National Clearing House of Rehabilitation Training Materials: https://www.nchrtm.okstate.edu/index--low.htm.

* Resources for the Disabled: https://www.aip.org/aip/urls/disable.html.

* Resources for Research: https://www.sped.ukans.edu/speddisabilitiesstuff/welcome.html.