Cerebral Palsy and Birth Injury Resources

National Birth Injury Resource Guide

Getting the help you need when you or a loved one has experienced a birth injury is crucial.  Across the country, there are many ways to learn more information about disabilities, get assistance financially, medically, or otherwise for you or a loved one with a disability, and find support groups along the way.

Information About Disabilities

  • HealthfinderA website which offers a comprehensive database of a broad range of health topics from nutrition to pregnancy. The website offers personalized preventive service advice as well as assistance finding a doctor near you.
  • Bright Futures for Families: Bright Futures for Families compiles health resources for families that are similar to the Bright Future health materials offered to professionals, but are more comprehensive in order to offer a better understanding of health issues.  These resources highlight key information about child development and what to look for as a child grows from infancy through adolescence.
  • ADA: This website aims to provide citizens with essential information about the Americans with Disabilities Act.  Information about different state and government regulations, different cases involving the ADA, and much more is made public here to assist communities and individuals.
  • Ability ListAbility List is a website dedicated to helping individuals with disabilities share medical resources, events, opportunities, and other information with one another.  The website details specific resources and offers an extensive list of the ones located near you based on postal code.
  • Baby Center: BabyCenter.com is a website trusted by expecting parents and parents everywhere for information on getting pregnant, pregnancy, babies, toddler, and older kids.  It offers specific information on different child development milestones and the progress of children from infancy to adolescence.
  • Mayo ClinicThe Mayo Clinic website offers information on all diseases and conditions, as well as their symptoms, tests, and treatments.  It also provides information on finding the right doctor near you, getting appointments, and costs and insurance for health care services.
  • HealthLineThe Health Line website offers general information on health issues, news, resources, and discussions.  It is useful for those learning about disabilities in that it offers extensive information on symptoms, treatments, and support for a wide range of different disabilities and concerns.
  • Center for Disease Control and PreventionThe Center for Disease Control and Prevention website is America’s most extensive and up-to-date medical resource guide for diseases and health conditions.  Disabilities, diseases, and health conditions are explained in depth on the website, with information for parents and caretakers about how to get help and what steps to take next.
  • Department of Health and Human ServicesThe U.S. Department of Health and Human Services website provides comprehensive information on all aspects of health and allows people to find the resources they need in their hometowns.  Unlike many other medical websites, this site also includes abundant information about health insurance, public health concerns, and social services.
  • MedScapeMedScape is a website which offers clinical resources and information mainly for the use of healthcare professionals and physicians.  It offers incredibly details information about signs and symptoms, treatments, and management of different diseases and conditions.
  • Assistive Technology Industry AssociationThe Assistive Technology Industry Association assists the Assistive Technology Industry in ensuring that those with disabilities know what devices can assist them.  The website offers specific information about new technologies that can serve individuals with special needs.
  • National Rehabilitation Information CenterThe National Rehabilitation Information Center website offers a vast array of tools for disabled individuals, including resources on education, mental health, employment, general health, financial aid, and many others.  The website also provides information and resources on specific disabilities.
  • Disability Resource NetworkThe Disability Resource Network is a website which offers information about many different supportive services for people of any age with disabilities.  The website provides information about transition programs, alternative education programs, advocacy, and other services.

Information on Premature Birth and Pregnancy

  • March of DimesMarch of Dimes is an organization whose main focus is premature birth, birth defects, and infant mortality.  A large part of the website’s aim is to provide key information about these concerns to expecting and new parents so that they can know what health problems to look for in their premature babies.
  • What to ExpectWhat to Expect is a website based on the book, What to Expect When You’re Expecting, by Heidi Murkoff, which was called the “pregnancy bible.”  As such, it contains details information on pregnancy issues, complications, premature birth, and many other thoughts and concerns for expectant mothers.  
  • WebMD: WebMD is a website for general and comprehensive health information, organized from A-Z.  Many find it especially helpful for pregnancy and family concerns, and offers extensive information on preterm birth signs, symptoms, and causes.

Information on Epilepsy

  • Epilepsy FoundationThe Epilepsy Foundation offers information on everything related to epilepsy, including the basic symptoms, diagnosing epilepsy, epileptic seizures, epilepsy statistics, epilepsy news, and more.  Furthermore, the website provides information on managing epilepsy, finding support groups, and even contacting specialists in your area.
  • National Institute of Neurological Disorders and StrokeThe National Institute of Neurological Disorders and Stroke covers all neurological disorders, while offering detailed information about each one.  The website provides information on the disorders, symptoms, and treatment, but also details new research on the disorders and links to other organizations that patients may find helpful.
  • Citizens United for Research in EpilepsyCitizens United for Research in Epilepsy is a nongovernmental organization that strives to fund a cure for epilepsy. The organization leads epilepsy research in the country, and thus the website offers more detailed information about progresses in the effort to cure epilepsy.

Information on Hypoxic-Ischemic Encephalopathy (HIE)

  • Hope for HIEHope for HIE is an organization which strives to give education, support, and awareness to families struggling with HIE.  The website provides abundant HIE educational resources as well as information about different charity events given by the organization. Click here to learn more.
  • Beautiful Faces of HIE (Facebook): Beautiful Faces of HIE is a closed Facebook support group for legal guardians and parents of children with HIE and a moderate to severe outcome.
  • Coping with HIE/CP (Facebook): Coping with HIE/CP is a Facebook group for individuals or parents of individuals with HIE or Cerebral Palsy.  It is a support group on which people can tell stories and communicate with others about resources and information regarding these disabilities.

Information About Cerebral Palsy

  • United Cerebral PalsyUnited Cerebral Palsy provides support, education, and advocacy services to those affected by cerebral palsy and other disabilities.  Their website provides specific information on cerebral palsy as well as resources to assist in the quality of life of those with cerebral palsy.

Information About ADD/ADHD (Attention Deficit Hyperactivity Disorder)

  • Children and Adults with Attention-Deficit/Hyperactivity Disorder: Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD), is a national non-profit organization that strives to offer education, support, and advocacy for individuals with ADHD.  Their website offers medical details on ADHD as well as educational tools and resources for families and professionals.

Information About Brain Damage and Stroke

  • National Institute of Neurological Disorders and Stroke (NINDS)The National Institute of Neurological Disorders and Stroke (NINDS) conducts and supports research on brain disorders and includes information on current research details and different organizations which take part in this research.
  • Brain Injury Association of AmericaThe Brain Injury Association of America strives to increase awareness and understanding of brain injuries and help those with brain injuries receive the quality medical care they need.  The website can help you find a BIA organization in your state and then get the support and assistance you need close to home for an individual with a brain injury.

Information About Intellectual and Developmental Disabilities (I/DD)

  • American Association on Intellectual and Developmental DisabilitiesThe American Association on Intellectual and Developmental Disabilities strives to further research, policies, practices, and universal human rights for people with intellectual and developmental disabilities.  The website provides information for professionals who work with individuals with intellectual and developmental disabilities, communities who want to make improvements on their services for those with intellectual and developmental disabilities, and anyone who wants to learn more about intellectual and developmental disabilities.
  • The ArcThe Arc is the largest national community-based group which maintains the goal of serving people with intellectual and developmental disabilities from any age group.  Their website offers information on how to get involved in local chapters and how their mission works to improve the quality of life of individuals with intellectual and developmental disabilities.

Information About Learning Disabilities

  • Learning Disabilities Association of AmericaThe Learning Disabilities Association of America website provides answers, support, advocacy, legislative information, research news, events, and resources for individuals with learning disabilities, their families, and the educators and professionals who work with them.
  • National Center for Learning DisabilitiesThe NCLD provides families, young adults, and educators with resources and information to help improve the lives of those with learning disabilities.  The website offers a tool for parents called Understood, which they can personalize with information about their child’s struggles and then find assistance and activities catered specifically to them and their families.

General Assistance Programs

Financial Assistance

  • Aubrey Rose Foundation: The Aubrey Rose Foundation aims to help build up the family unit of those caring for children with life threatening illnesses. They do so by providing grants for medical expenses, scholarships for educational pursuits, and gifts of food and toys to children and families in need.

Healthcare Assistance

  • Children’s Charity Fund, Inc.: Children’s Charity Fund, Inc. strives to assist families whose financial means have been exhausted as a result of health care bills.  The fund offers many services to families of sick children, including medical equipment for disabled and handicapped children, educational grants to help children pursue their educational goals, a toll-free national hotline for handicapped children, and many others.
  • First Hand Foundation: The First Hand Foundation is a organization that provides funding for children for health care when their financial resources have been drained.  These funds can be used toward travel required for medical care, necessary clinical needs, and medical equipment.
  • United Healthcare Children’s Foundation: United Healthcare Children’s Foundation aims to offer access to health-related services that are not covered or not fully covered by health benefits. The Foundation provides financial assistance through medical grants toward the cost of these medical treatments.
  • Variety – the Children’s Charity: Variety – the Children’s Charity seeks to provide children with serious illness, disadvantage, or disability with what they need to lead happy and healthy lives.  They offer life-saving medical services and health care, life-changing equipment for mobility and independence, and communication and educational services to children in need.
  • Shriners Hospitals for Children: Shriners Hospitals for Children aim to provide superior healthcare to children with burn injuries, neuromusculoskeletal conditions, and other special care needs.  Their care is centered around family and collaborative care in orthopedics, cleft lip palate, burn care, and spinal cord injuries.
  • Ronald McDonald House: The Ronald McDonald House program provides a “home-away-from-home” for families so they can stay close to their hospitalized child at little or no cost.  They also provide family rooms for relatives to stay in inside the hospital while their children are being treated and use their resources to give children all over the world access to the health care they need.

Educational Assistance

  • Head StartHead Start is a program run by the United States Department of Health and Human Services which offers education to preschool children of low-income families, including children with disabilities.  Children who participate experience a wide variety of educational activities and also receive meals and snacks, health care and dental care, and safe playtime.

Housing Assistance

  • Centers for Independent LivingCenters for Independent Living are community-based organizations that are operated by people with disabilities with the goal in mind of achieving independence while also offering resources to those with disabilities.  They offer services such as transition, independent living skills, information and referral, individual and systems advocacy, and peer support to those living in their facilities.

Parenting and Family Resources

  • Starlight Children’s FoundationNational Birth Injury Resource GuideStarlight Children’s Foundation aims to improve the quality of life for children with chronic and life-threatening illnesses and life-altering injuries by helping them find joy and have fun.  The foundation partners with companies and charities to provide entertainment, education, and family activities that help kids cope with the pain, fear, and isolation of prolonged illness.
  • Family VoicesFamily Voices aims to achieve family-centered care for youth with special health care needs or disabilities. Working through a national network, they advocate for improved public and private policies, offer families tools to make informed decisions, build partnerships among professionals and families, and act as a primary resource on health care.

Employment Assistance

  • Enable AmericaEnable America is a nonprofit which strives to increase employment for Americans with disabilities.  They work to bridge the gap between disabled job seekers and employers who want to hire them and eliminate general barriers to the employment of the disabled.

Adaptive Technology, Equipment and Transportation

  • Children’s Brain Injury Association: Children’s Brain Injury Association awards grants for special bikes, fuel, technology equipment, therapy, and other medical expenditures.  The organization also promotes education regarding brain injuries in schools, communities, and hospitals.
  • The Lexi Kazian Foundation: The Lexi Kazian Foundation (Helping from Heaven) is an organization which strives to improve the quality of life and comfort of children with special needs.  In so doing, the foundation keeps a closet of necessary equipment for children with special needs that can be lent out to those in need.
  • Friends of ManFriends of Man Charity assists people from all age groups with healthcare and lifestyle needs, including mobility equipment, medical equipment and procedures, prescriptions, insurance, and basic needs.  People of all ages can request that a referring professional submit an application to Friends of Man on their behalf.
  • Wheel to Walk FoundationThe Wheel to Walk Foundation  provides financial assistance to children under 20 with special needs who have had difficulty obtaining funding for equipment and services. Typical equipment includes bath chairs, gait trainers, therapy tricycles, communication devices, and wheelchairs.
  • National AMBUCS, Inc./ AMTRYKE LLC: National AMBUCS™, Inc. is a non-profit organization focused on “creating mobility and independence for people with disabilities.” In so doing, the group donates AmTryke® therapeutic tricycles to people who are unable to ride traditional bikes, does many forms of community services for those with disabilities, and gives academic scholarships to therapists.

Special Needs Camps and Activities

  • VSA – (formerly Very Special Arts)VSA is an international organization which is based in arts, disability, and education and encourages the creativity of people with disabilities.  It was founded in Washington D.C., but has many additional groups in different states.
  • Disabled Sports USADisabled Sports USA is an organization which strives to develop confidence, fitness, and independence for disabled individuals through involvement in recreation, community sports, and educational programs.  They now have over 100 community-based chapters in 37 states which pursue inclusion of the disabled in organized sports.

Support and Informational Groups

  • The ArcThe Arc is a foundation which strives to protect the human rights of individuals with intellectual and developmental disabilities.  They serve people with more than 100 different disabilities, including Down Syndrome and Autism.
  • United Cerebral Palsy (UCP)United Cerebral Palsy aims to achieve productivity, full citizenship, and independence for people with many different types of disabilities.  They offer support and specific services in different communities in their affiliate groups.  These groups can easily be found on their website in an area near you.
  • Epilepsy Foundation: The Epilepsy Foundation offers information on everything related to Epilepsy, including the basic symptoms, diagnosing epilepsy, epileptic seizures, epilepsy statistics, epilepsy news, and more.  Furthermore, the website provides information on managing epilepsy, finding support groups, and even contacting specialists in your area.
  • March of DimesMarch of Dimes is an organization whose main focus is premature birth, birth defects, and infant mortality.  A large part of the website’s aim is to provide key information about these concerns to expecting and new parents so that they can know what health problems to look for in their premature babies.
  • The American Academy for Cerebral Palsy and Developmental MedicineThe American Academy for Cerebral Palsy and Developmental Medicine serves those with Cerebral Palsy and other childhood-onset disabilities by offering a network of information, lifelong services, research, collaboration with different organizations, and other tools to assist them.
  • The Disability Network: The Disability Network is an online support group which provides people with disabilities and their families with independent living support, information and referrals, peer support, and advocacy.  The website serves as a comprehensive collection of resources on government sites, advocacy organization, assistive technology, and other areas of importance to disabled individuals, their families, and their communities.
  • Cerebral Palsy Family NetworkThe Cerebral Palsy Family Network aims to bring together those families of children with Cerebral Palsy.  The website provides information and legal resources and offers a community in which families can share news, resources, stories, and support with one another.
  • Center for Parent Information and ResourcesCenter for Parent Information and Resources is a web-based toolkit created to help educators, families, State educational agencies, facilities, and community agencies to assist and support youth with disabilities in juvenile correctional facilities.
  • MUMS National Parent-to-Parent Network: MUMS is a network which provides information, resources, and a list of Hyperbaric Oxygen Therapy clinics to parents and caretakers of children with disabilities.
  • CityData for Children with Special NeedsCityData offers a forum-based discussion board for parents of children with special needs on which they can post about topics and share information, answers to questions, general support, or other helpful resources.
  • Circle of MomsCircle of Moms is a forum-based community for mothers and fathers.  It contains general discussion threads about parenting topics of all sorts, including many on sharing resources and information regarding children with disabilities.
  • Parents of Disabled Adults Support: Parents of Disabled Adults Support on caring.com is a forum-based exchange of information between parents of adult children with mental/learning disabilities.
  • The Center for Children with Special NeedsSeattle Children’s Center for Children with Special Needs provides information to families and professionals on children who have chronic physical, emotional, developmental, or behavioral conditions.
  • Institute on Disability at the University of New HampshireThe Institute on Disability aims to achieve participation, equal opportunities, and full access to all people, including those with disabilities.  They do so by strengthening communities and advancing policy change, education, and resources.

More Birth Injury Resources from Reiter & Walsh, P.C.