PARENTS

Below is a survey for families with children who have limb loss and/or differences. The survey is to better understand the needs of this community and to improve resources. This is an Institutional Review Board (IRB) approved study at the University of North Carolina, Chapel Hill.

Take Family Survey

We have compiled a list of resources for families with children with limb loss or orthopedic disability. We hope you find thes helpful.

The Association is not responsible for the content of any material presented or discussed on the referenced site nor does it monitor those sites or ensure that the site addresses are accurate.

If you have a link which may fit above criteria, please submit your link to info@acpoc.org.

Support Groups

Amputee Coalition official website of the Amputee Coalition whose mission is to empower people with limb loss through advocacy, education, and support.

Adaptive Sports / Camps/ Fitness / Recreation Groups

CAMPS

Adventure Amputee Camp (AAC) The mission of the Adventure Amputee Camp is to encourage children with amputations or limb differences to stretch their potential and imagination, and explore all that is possible.

Amputee Coalition Paddy Rossbach Youth Camp Camp is a 6-day traditional summer camp experience for children ages 10-17 who have limb loss or limb differences. The camp offers fun and exciting activities where campers are challenged to increase independence, test themselves, and build new friendships in a supportive, caring environment.

Camp No Limits The vision of Camp No Limits is to be the leading camp for young people with limb loss, and their families, in the United States and abroad and to be recognized for camper satisfaction, amputee education, peer support and age specific physical, recreational and social skill development. Camp sites include California, Maine, Idaho, and Florida.

Camp STAR, Youth Amputee Camp Campers are encouraged to make new friends, to help one another and share their experiences. We provide an environment where our campers feel free and comfortable to participate in sports, games, and various other activities without fear of embarrassment or criticism. We motivate our campers to challenge themselves and try new things.

WATER SPORTS

AmpSurf A non-profit organization whose mission is to Promote, Inspire, Educate, and Rehabilitate people with disabilities, including children, through adaptive surfing and the healing power of the ocean.

USA Waterski Water skiing has been adapted so that physically disabled athletes can participate and compete in all three events traditional to able-bodied competition.

USA Sailing Provides instruction and environment for disabled individuals to experience the thrill of sailing

American Canoeing Association This site has info on canoeing and kayaking including adaptive paddling.

TENNIS

USTA The official tennis site and includes links for adaptive and wheelchair tennis allowing search for programs by zipcode.

SOCCER

US Power Soccer Association The Official Site of the United States Power Soccer Association (USPSA) which governs the sport of Power Soccer in the United States and helps promote the sport on a national and international level.

CYCLING

World Team Sports Cycling World T.E.A.M Sports (The Exceptional Athlete Matters) uses the universal power of sports to create soul-stirring experiences by teaming disabled athletes with able-bodied athletes.

SNOW SKIING/SNOWBOARDING/CROSS COUNTRY

WELLNESS

Universal Wheelchair Football Association Wheelchair football is an extremely fun and adaptable sport that almost ANYONE can play.

WILDERNESS ACTIVITIES

Wilderness Inquiry, adventure travel Offers a wide variety of canoe, sea kayak, dogsled, raft, horse pack and hiking trips throughout North America and the World. And make the outdoors accessible to everyone, including persons with disabilities.

HEALTH AND FITNESS

YMCA YMCAs are at the heart of community life across the country: 42 million families and 72 million households are located within three miles of a YMCA. 448 YMCA’s throughout the country offer fitness classes for people with disabilities.

Ways to Enhance Children’s Activity & Nutrition We Can! is the U.S. government program designed for families and communities to help children achieve a healthy weight through improved food choices, increased physical activity and reduced screen time.

TRACK AND FIELD

HOCKEY

US Ice Hockey national website includes section for disabled, amputee, and special needs hockey information.

SPORTS ORGANIZATIONS

Spokes ‘n Motion (disabled sports equipment) Spokes ‘n Motion works with many companies to help continue offering and creating new opportunities to the disabled community.

Paralyzed Veterans of America Official Website of the Paralyzed Veterans of America

National Sports Center for the Disabled Founded in 1970, the National Sports Center for the Disabled’s mission is to positively impact the lives of people with any physical or mental challenge through quality adaptive recreation programs in over 20 sports.

Lakeshore Foundation Lakeshore Foundation is a not-for-profit organization that promotes independence for persons with physically disabling conditions and opportunities to pursue active healthy lifestyles.

USA Paralympic and Canadian Paralympic official Committee websites for these countries with links to other regions and the international committees

Dwarf Athletic Association of America DAAA was formed in 1985 to develop, promote and provide quality amateur level athletic opportunities for dwarf athletes in the United States. Their mission is “To encourage people with dwarfism to participate in sports regardless of their level of skills.”

Disabled Sports USA A national nonprofit organization established in 1967 by disabled Vietnam veterans to serve the war injured. DS/USA now offers nationwide sports rehabilitation programs to anyone with a permanent disability.

Professional Association of Therapeutic Horsemanship International (PATH Intl.) PATH International is a national non-profit organization that changes and enriches lives by promoting excellence in equine assisted activities. PATH Intl is the voice for Equine Assisted Activities and Therapies (EAAT) where individuals with and without special needs experience the rewarding benefits horse interactions.

American Association of Adapted Sports Programs Originating in Georgia, AAASP’s mission is to oversee the partnership of leaders in education and community to lay the foundation for a national network of interscholastic adapted athletic programs.

STRIDE Adaptive Sports STRIDE is a multidisciplinary, educational organization specializing in therapeutic recreation-related services for individuals with disabilities spanning over many Northeastern states.

Global HELP (Health Education using Low-cost Publications) A humanitarian organization providing free health-care information to developing countries and is committed to making medical knowledge accessible worldwide.

Starlight Children’s Foundation Canada Mandated to improve the equality of life of children with serious illness

Transition Resources

Adolescent Health Transition Project The Adolescent Health Transition Project is designed to help smooth the transition from pediatric to adult health care for adolescents with special health care needs. This site is a resource for information, materials, and links to other people with an interest in health transition issues.

Technology Resources

O&P Digital Technologies An Internet portal dedicated to providing comprehensive information and services to the orthotics and prosthetics profession. The site is owned and operated by a Florida internet technology company that provides a full range of web/software development and technology services tailored to the O&P profession.

Prosthetics Research Laboratory and Rehabilitation Engineering Research Program at Northwestern University The goal of their research is to improve the quality of life for persons who use prostheses (limb replacements) and orthoses (assistive systems) through creative applications of science and engineering to the P&O field located in RIC

Wheelchair features informative articles about wheelchairs, wheelchair accessories and wheelchair sports. Also included are interviews with disabled athletes and a collection of free wheelchair sports videos.

Resources

MAGAZINES

NEWSLETTERS

Capabilities provides information about research and education activities at the Northwestern University Prosthetics-Orthotics Center (NUPOC). Clinicians, manufacturers, consumers, and fellow investigators who are involved in prosthetics and orthotics (P&O) will find articles about the research, presentations, publications, and other activities conducted by NUPOC staff and students. Contact: reiu@northwestern.edu

CHILDREN’S BOOKS

Especially for children with limb deficiencies or amputations

EXERCISE BOOKS

BOOKLETS

A Manual for Below Knee (Trans-tibial) Amputees, 5th Edition. By Alvin L. Muilenburg and A. Benne H. Wilson, Jr. Rehab Press. Phone: (713) 524-3949

Below Amputation: A Guide for Rehabilitation. By Todd Kuiken, Mark Edwards, and Nicole Soltys. 31 pages. Rehab Institute of Chicago. Phone: (312) 238-2859 www.RICbookstore.org.

Children with Limb Loss: A Handbook for Families – several booklets by age and subject. Center for Limb Differences, Mary Free Bed Rehabilitation Hospital. Phone: (616) 840-8224 www.maryfreebed.com.

Exercises for the Lower Extremity Amputee – A program for regaining optimal function. Medic Publishing Co. Phone: (425) 222-0844 ISBN: 0-934230-46-3.

American Physical Therapy Association, brochures

REACH – The Association for Children with Upper Limb Deficiency. Quarterly newsletter “Within Reach”. Phone: (0845) 1306 225

EDUCATIONAL PROGRAMS/RESOURCES

Global HELP (Health Education Low-cost Publications) — An organization providing free health-care information to developing countries and is committed to making medical knowledge accessible worldwide. Topics available for families include Cerebral Palsy, Arthrogryposis, Spina Bifida and treatment of clubfoot in different languages.

Limb Loss Education Day And Awareness Month – Program of the Amputee Coalition of America. Phone: 1-888-AMP-KNOW (267-5669) www.amputee-coalition.org.

Limb Loss Resource Center — Through the following link you will be directed to the ACA page which lists resources. Each topic links to resource lists including books; articles from a variety of sources, video/CD ROMs, and other related websites/organizations. www.amputee-coalition.org

Parent to Parent is a national non-profit organization that provides emotional and informational support to parents of children who have special needs. Parent to Parent programs across the country provide emotional and informational support to families of children who have special needs most notably by matching parents seeking support with an experienced, trained ‘Support Parent’. www.p2pusa.org.

INFORMATION SHEETS

Exploring the World: A Comprehensive Wheelchair Accessible Travel Guide — A website for wheelchair users for planning your next adventure, equipped with the knowledge you need to craft memories that last a lifetime.

Physical Fitness: A Guide for Individuals with Lower Limb Loss. By Ernest M. Burgess and Albert Rappoport. Department of Veterans Affairs Rehabilitation Research and Development Service. Dept of VA – Veterans Health Administration, Washington DC. www.va.gov.

Tummy Time Tools – A developmentally based program to incorporate positioning, handling, and fun activities into the lives of young infants. By Colleen Coulter, Laura Hylton-Plank, Dulcey Lima and Deanna Fish. Children’s Healthcare of Atlanta. Phone: (404) 785-6890

ACPOC would like to recognize Julie Honeycutt, PT, Barb Kaniewski, OTR, Jamee Riggio Heelan, OTR/L, Colleen Coulter, PT, and Joanne Shida-Tokeshi, OTR/L who originally presented the majority of this material in a workshop at the 2005 ACPOC annual meeting. The goal of this workshop was to generate resources that would be useful for the families of children with limb differences.