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Cerebral Palsy Research and Organizations Links
American Academy for Cerebral Palsy and Developmental Medicine (AACPDM)
AACPDM is a multidisciplinary scientific society devoted to the study of cerebral palsy and other childhood onset disabilities. The site includes libraries, news, research, and conferences.
United Cerebral Palsy (UCP)
UCP is a leading source of information on cerebral palsy and an advocate for the rights of persons with any disability. This national organization's mission is to advance the independence, productivity and full citizenship of people with cerebral palsy and other disabilities, through their commitment to the principles of independence, inclusion and self-determination.
UCP-Net: United Cerebral Palsy Affiliates
This page will help locate the United Cerebral Palsy Center or affiliate in your area. Simply enter your state or zip code.
Refinance and Mortgage Guide for People With Disabilities
This guide seeks not only to provide the reader with the most relevant and essential resources needed to navigate the myriad of red tape and sometimes rigid processes regularly associated with real estate purchases; it also aims to educate you.
The National Institute of Neurological Disorders and Stroke (NINDS)
The NINDS conducts and supports research on brain and nervous system disorders including cerebral palsy. Created by the U.S. Congress in 1950, NINDS is one of the more than two dozen research institutes and centers that comprise the National Institutes of Health (NIH). The mission of the NINDS is to reduce the burden of neurological disease.
Cerebral Palsy: Hope Through Research
This website provides a comprehensive overview of cerebral palsy, including treatment and related disorders. The site is supported by the National Institute of Neurological Disorders and Stroke (NINDS).
Gillette Children's Specialty Healthcare
This is the site of Gillette Children's Specialty Healthcare, an organization that seeks to meet the special health-care needs of people - primarily children and teens - who have disabilities, including cerebral palsy. Their mission is to help promote greater well-being, independence and enjoyment in life for persons with disabilities, combining medical, nursing, therapeutic, technical and psychosocial information in family-centered programs.
Cerebral Palsy: A Guide for Care
From the Cerebral Palsy Program at the Alfred I. DuPont Institute, this site gives a condensed version of the information available and an overview of material discussed in much more depth in the book, Cerebral Palsy; A Complete Guide for Caregiving, by Miller, Bachrach, et al, published by Johns Hopkins Press.
Cerebral Palsy: Centers of Disease Control and Prevention (CDC)
This website, sponsored by the CDC, provides general information on cerebral palsy and offers suggestions on where to find resources for people affected by cerebral palsy and other developmental disabilities
The Cerebral Palsy Parent
This website provides information and resources to parents of children with cerebral palsy. CPParent is a support group of parents, caregivers and others who work with children with cerebral palsy.
Federal and State Services and Resources for Children with Cerebral Palsy and Other Disabilities Links
U.S. Department of Education (DOE)
The DOE web site has a written guide to help parents, teachers, and education agencies put in place Individualized Education Programs (IEP) for children (including preschoolers) with cerebral palsy and other disabilities. [View "A Guide to the Individualized Education Program"]
National Dissemination Center for Children with Disabilities (NICHCY)
This web site has resource sheets that list key programs in each state for children with cerebral palsy and other developmental problems and for their families. The lists include state agencies serving children and youth with disabilities, state chapters of disability organizations and parent groups, and parent training and information projects. [View the NICHCY Resource to find your state]
Another NICHCY publication answers questions and concerns that parents, teachers, and others who work with children with disabilities have about the Individuals with Disabilities Education Act (IDEA). IDEA is the federal law that supports special education and related services for children and youth with cerebral palsy and other disabilities. This publication is available in both English and Spanish.
[In English: Questions and Answers about IDEA]
[En Español: Preguntas y Respuestas Sobre IDEA]
People of all ages who have cerebral palsy may be eligible for health care coverage through Medicaid. Each state runs its own Medicaid program. The Centers for Medicare & Medicaid Services Web site has general information about Medicaid, including who is eligible and what services are provided. It also has the Web address for each state's program. [Find the Web site for your state's Medicaid program]
National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR)
NIDILRR funds state projects that help people of all ages with cerebral palsy and other disabilities get access to AT devices and services.
MEDLINEplus: Assistive Devices
MEDLINEplus web site is an online service of the National Library of Medicine. It links users to information about specific health topics, including assistive devices for people with cerebral palsy. The site includes general information about assistive devices, plus links to information about funding, research, specific conditions, dictionaries, organizations, statistics, and children, teenagers, and seniors.
This site is run by the National Library of Medicine. It has information about studies funded by the National Institutes of Health, other federal agencies, and companies that make drugs. You can find out about studies involving people who have cerebral palsy and other disabilities. When you go to the ClinicalTrials.gov site, you can enter the name of the disability you are interested in, such as “cerebral palsy” then click on the Search button and you will see a list of related studies.
Books about Cerebral Palsy for Parents and Caregivers
Children with Cerebral Palsy: A Parents’ Guide, by Elaine Geralis, Woodbine House, Inc., Second Edition (1998).
Cerebral Palsy: A Complete Guide for Caregiving, by Freeman Miller and Steven J. Bachrach, A Johns Hopkins Press Health Book (2006). A guide for parents and caregivers of children and adults with cerebral palsy (CP), as well as for adolescents and adults with cerebral palsy. Part I provides an overview of CP and explains the medical and psychosocial implications of associated conditions, offering advice for parents on becoming an advocate for their child. Part II contains practical information on caregiving and medical procedures. Part III defines and describes medical terms and diagnoses, surgical procedures, and assistive devices. Includes a list of resources and recommended reading.
Early Diagnosis and Interventional Therapy in Cerebral Palsy: An Interdisciplinary Age-Focused Approach by Carl Scherzer, Pediatric Habilitation. Highlights specific concerns about diagnosis and treatment of cerebral palsy in infants from birth to three years. Topics include trends in etiology and epidemiology, clinical assessment of the infant, research and cerebral palsy, and assessment and treatment planning. This third edition reflects changes in the field based on advances in molecular and cellular research, developmental neurology, screening, and interventional therapy
Keys to Parenting a Child With Cerebral Palsy by Jane Faulkner Leonard, Sherri L. Cadenhead, and Margaret E. Myers, Barron’s Parenting Keys (1997). This book covers cerebral palsy, and what it is like to have a child with cerebral palsy. It talks about the family dynamics, how to encourage your child to be independent, how to handle friends, and how to discuss the disability.
21st Century Complete Medical Guide to Cerebral Palsy, Authoritative Government Documents, Clinical References, and Practical Information for Patients and Physicians, by PM Medical Health News CD-ROM (Mar 2004).
The Treatment of Gait Problems in Cerebral Palsy by James Gage, Mac Keith Press, (2004). Experts who manage gait problems in cerebral palsy examine the way the brain controls locomotion and the types of brain pathology associated with cerebral palsy. Current treatment modalities and treatments of specific gait problems are covered in detail, including computerized gait analysis and methods of assessing the child and evaluating treatment outcomes.
Posture and Movement of the Child With Cerebral Palsy, by Marcia Stamer, P.T., Academic Press (2001).
Caring for Children with Cerebral Palsy: A Team Approach, by John P. Dormans, Paul H. Brookes Publishing Co., (1998). An interdisciplinary reference for team-based, collaborative care of children with cerebral palsy. Twenty-one chapters detail information on cerebral palsy diagnosis, management of cerebral palsy impairments, optimizing function and preventing disability, and preventing handicap by creating opportunities.
Treatment of Cerebral Palsy and Motor Delay by Sofie Levitt, Blackwell Publishing (2004). Provides an outline of therapeutic approaches and suggests treatment options for children with cerebral palsy. Suggests the employment of the author's Collaborative Learning Approach and offers a new chapter on adolescents and adults with cerebral palsy. Illustrated with halftone photos.
Management of the Motor Disorders of Children with Cerebral Palsy by David Scrutton and Margaret Mayston, Clinics in Developmental Medicine, Mac Keith Press, (Feb 1, 2003). Illustrated- Covers aspects of the treatment of cerebral palsy. Discusses the various types of cerebral palsy, assessment techniques, goal setting, learning and neural plasticity, and more.
Handling the Young Child With Cerebral Palsy at Home by Nancy R. Finnie, Butterworth-Heinemann, A division of Redd Educational Publishing (reprinted 2000). A manual for parents and other caregivers, explaining medical aspects of the condition, answering questions, and suggesting ways to help children accomplish routine activities. There are chapters on teaching methods emphasizing innovative ways parents can position and support a child to help him practice newly acquired motor skills throughout the day.
Cerebral Palsy, by Freeman Miller, MD, Springer Science & Business Media, (2005). This resource is directed to members of the medical team to help navigate the complexity of cerebral palsy care. Readers will become familiar with treatments that fall outside of their own disciplines while also benefiting from a review of current practices in their own fields. This comprehensive reference outlines the etiology of cerebral palsy and presents a description of muscle tone and movement problems.
Children With Cerebral Palsy: A Manual for Therapists, Parents and Community Workers, by Archie Hinchcliffe, Sage Publications (2007). This book was written for therapists but the illustrations, glossary and minimal use of technical terms will ensure that parents and community workers will also find the book useful and informative.
The Official Parent's Source book on Cerebral Palsy, by James N. Parker, Phillip M. Parker (Edits) Icon Health Publishing (2002). Although this book on cerebral palsy gives information useful to doctors, caregivers and other health professionals, it tells parents where and how to look for information covering virtually all topics related to cerebral palsy, from the essentials to the most advanced areas of research.
Cerebral Palsy: The Child and Young Person, edited by Lesley Cogher, Elizabeth Savage & Michael E. Smith, Chapman Medical (2002). This book provides a description of the development of children and teenagers with cerebral palsy. The authors describe the emotional, neurological, social, and motor control issues.
Living With Cerebral Palsy
My Perfect Son Has Cerebral Palsy: A Mother's Guide of Helpful Hints by Marie A. Kennedy, Third Charm Publishing, (2001). A resource of non-medical information for parents and families of children with cerebral palsy.
From Where I Sit: Making My Way With Cerebral Palsy, by Shelley Nixon, Scholastic, Inc., (1999). An autobiography by Shelley Nixon in which she talks about growing up with cerebral palsy. Publishers note: "Shelley Nixon loves to laugh, to write stories and poetry, and to challenge herself. In this heartfelt autobiography, she tells readers how she does all this while confined to a wheelchair and living with all the other challenges of cerebral palsy. She does not let her condition dominate her story. Instead, she writes about childhood, friendships, family, crushes, and art - all things important to her."
From CP to CPA: One Mans Triumph Over the Disability of Cerebral Palsy by Robin Pritt (2003). Editor's note: "An uplifting personal testimony of Robin Pritt's drive to achieve his dreams and overcome barriers set in his path by cerebral palsy. Tracing his journey from a Special Education classroom to the University of Illinois where he successfully obtained CPA certification. From CP to CPA is a motivational and inspirational life journey which is very highly recommended reading for anyone having to cope with a life-altering disability, injury, or illness."
Uncommon Voyage 2 Ed: Parenting a Special Needs Child by Laura Kramer, (2001). Uncommon Voyage, first published in 1996, documented Laura Shapiro Kramer's search for alternative treatments for her son Seth's cerebral palsy in the face of an uncomprehending medical establishment. In this revised and expanded edition, the author redefines the main complementary therapies discussed earlier and explores new solutions she and Seth have discovered.
Books for Children with Cerebral Palsy
Rolling Along: The Story of Taylor and His Wheelchair by Jamee Riggio Heelan, Nicola Simmonds, Series Rehabilitation Institute of Chicago Series (2000). A glimpse into the life of a young boy with cerebral palsy. Taylor describes what it is like to have cerebral palsy, aspects of his daily activities at home and at school, and his desire for independence.
Howie Helps Himself by Joan Fassler and Joe Laker, Albert Whitman Concept Books Series (1975). Though he enjoys life with his family and attends school, Howie, a child with cerebral palsy, wants more than anything else to be able to move his wheelchair by himself.
Nathan's Wish: A Story About Cerebral Palsy - by Laurie Lears (Author) and Stacey Schuett (Illustrator) (2005). This book is about a boy with cerebral palsy who searches for a way to help an injured bird become rehabilitated, not realizing that what he finds will help transform his life as well.
Taking Cerebral Palsy to School, by Mary Elizabeth Anderson and Tom Dineen, Jayjo Books, (2000). Even though Chad has cerebral palsy, he can still attend school and do many of the same things as his classmates. Written from Chad's perspective, this book answers many of the questions his classmates have about cerebral palsy but may be too scared or uncomfortable to ask.
Robins Kaplan LLP Lawyers Handling Cerebral Palsy and other Birth Injury Cases
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