Cerebral palsy resources for parents

Contents

Links to Other Resources on Cerebral Palsy

American Academy of Cerebral Palsy and Developmental Medicineexternal icon
The American Academy of Cerebral Palsy and Developmental Medicine is dedicated to improvement in the care of people with childhood-onset disability, their families, and communities. Their website offers various resources for individuals and families, including a directory of providers.

American Academy of Pediatrics Healthy Childrenexternal icon
The American Academy of Pediatrics provides an overview of CP. This includes information on signs and symptoms, treatments, and associated problems.

Cerebral Palsy Research Registryexternal icon
Cerebral Palsy Research Registry is a multi-institutional collaborative effort whose primary mission is to improve our understanding of cerebral palsy.

CP Daily Livingexternal icon
CP Daily Living is an online resource designed to give families and caregivers of children with cerebral palsy a central place for practical information and resources within the context of an emotionally-supportive environment.

Let’s Cure CPexternal icon
Let’s Cure CP is a non-profit organization committed to funding cerebral palsy research.

MEDLINEplusexternal icon
MEDLINEplus is an online service of the National Library of Medicine. MEDLINEplus is designed to link you to information on specific health topics, including cerebral palsy. MEDLINEplus brings together information from many sources and is updated every day. This page includes information on general overviews, clinical trials, coping, disease management, research, specific conditions, dictionaries, organizations, children, and teenagers. Some materials are in Spanish.

Motor Delays: Early Identification and Evaluationexternal icon
This clinical report from the American Academy of Pediatrics provide more information on the early identification and evaluation of motor delays among children.

My Child Without Limitsexternal icon
MyChildWithoutLimits.org provides resources for families of young children ages 0-5 with developmental delays or disabilities, including CP. A “Guide to CP” can be downloaded from this site. The site also has a national Resource Locator where visitors can find local service providers, community organizations and government agencies.

National Information Center on Children and Youth with Disabilities (NICHCY)external icon
NICHCY provides information on disabilities and disability-related issues for families, teachers, and other professionals. NICHCY has a fact sheet about cerebral palsy that includes information on topics such as signs of cerebral palsy and treatment, as well as tips for parents and teachers. NICHCY staff will also give information and referrals over the phone (800-695-0285) or by email ([email protected]).

National Institute of Neurological Disorders and Stroke (NINDS)external icon
NINDS has a brochure on cerebral palsy that includes information on early signs of the condition, diagnosis, causes, treatment, and where to go for more information. The brochure is available in both English and Spanish.

Reaching for the Stars (RFTS)external icon
RFTS is the only non-profit pediatric cerebral palsy foundation in the US led by parents. RFTS is committed to advocacy, education and driving research to serve the needs of children with CP and the individuals involved in their care.

The Cerebral Palsy International Research Foundation (CPIRF)external icon
CPIRF is a not for profit 501(c)3 organization that funds research and educational activities related to the cause, cure and evidence-based care for those with cerebral palsy. The website has over 160 “research fact sheets”, web casts of scientific workshops, current and past research projects, discussion forums for current CP treatments, and a link to a registry of clinical trials in the United States and around the world.

United Cerebral Palsy (UCP)external icon
United Cerebral Palsy (UCP) educates, advocates and provides support services for people with a spectrum of disabilities, including CP. The site has a One Stop Resource Guide where visitors can locate organizations in each state to help answer questions about healthcare, home modifications, or financial assistance.

World CP Dayexternal icon
World CP Day is a global project dedicated to changing the world for people living with cerebral palsy and their families.

Resources for Adults with Cerebral Palsy

Developmental Medicine & Child Neurology journal’s special issue on adults with cerebral palsyexternal icon
The Developmental Medicine & Child Neurology journal offers access to articles based on a 2009 workshop that explored the unique challenges experienced by adults with cerebral palsy.

Easter Sealsexternal icon
Easter Seals’ Adult and Senior Services program provides a variety of home and community-based services affording adults and senior opportunities to live, learn, work, and play as a vital part of their own community or neighborhood. To find an Easter Seals program near you, please visit

National Institute of Neurological Disorders and Stroke (NINDS)external icon
NINDS has a brochure on cerebral palsy that includes information on the special health challenges that adults with cerebral palsy face. The brochure is available in both English and Spanish.

Scopeexternal icon
Scope works with individuals with disabilities of all ages and their families across England and Wales. Their website offers information on aging and cerebral palsy.

State Vocational Rehabilitation Agencyexternal icon
State Vocational Rehabilitation Agencies coordinate and provide counseling, evaluation, and job placement services for people with disabilities. This website provides contact information for the Vocational Rehabilitation Agency in each state.

The Arcexternal icon
The Arc is a community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. The Arc’s resources that may be relevant for adults with cerebral palsy are below.

  1. The Arc’s state and local chaptersexternal icon provide supported employment, job training, transition planning, respite care, supported living, and transportation, among other services and supports, to individuals with developmental disabilities.
  2. The National Council of Self Advocates of The Arcexternal icon is the formation of a group of leaders representing the full spectrum of ages and abilities across the national chapter network. By joining, individuals have the opportunity to network with other self-advocates.

United Cerebral Palsy (UCP)external icon
United Cerebral Palsy’s affiliates provide services such as housing, physical therapy, assistive technology training, individual and family support, social and recreational program, community living, employment, and employment assistance. This website can help you find an affiliate in your area.

Cerebral Palsy Resources

What Cerebral Palsy Resources Are Available?

Families affected by cerebral palsy face myriad challenges, including financial pressure associated with the disorder. Medical bills, lost productivity, and care expenses add up quickly, leaving financial shortfalls for some families.

Fortunately, widespread resources are available to ease the hardship of raising a child with cerebral palsy.

Know Your Options

Providing the highest level of care for children with cerebral palsy relies on affordable medical, financial, and legal assistance. From community care and funding, to government agencies focused on the disorder, essential support is offered on several fronts.

These valuable resources not only furnish financial help, in some cases, but they also educate families affected by CP and provide tools for managing the disorder.

A simple, no obligation, free case evaluation may help improve your child’s quality of life and give you peace of mind.

Financial Support Organizations

Social Security and Medicaid furnish financial support for families facing cerebral palsy diagnoses, but these are not the only places to find help with the disorder. Various public and private organizations step-in with resources aimed at childhood illnesses, providing funding for eligible families touched by CP.

United Cerebral Palsy (UCP) Elsie S. Bellows Fund – Assistive technology improves outcomes for those with disabilities, contributing to daily comfort and enhanced functionality. Cutting-edge medical technology comes with a price tag, however, so the UCP Bellows Fund provides financial resources to offset the cost of devices and equipment. Applications for the funding are submitted through local UCP affiliates, for review by the Bellows Committee.

Ability Found – Focused on providing affordable access to medical equipment, Ability Found works with patients’ health care providers to meet each need. The organization purchases equipment based upon available funding resources and the urgency of each circumstance.

Danielle’s Foundation – This non-profit organization provides resources for families affected by cerebral palsy and childhood brain injury. Its goal is providing therapies and equipment, as well as other benefits, assisting the brain injured population. Grants address the particular needs of each child, furnishing everything from electrical stimulation therapy to iPads and canine therapy companions.

Variety – The Children’s Charity – Freedom Program – Mobility, social inclusion, and independence are enhanced through the generous support of this organization, committed to providing needed equipment. Funding can be used for the purchase of:

  • Adaptive Bicycles
  • Wheelchairs
  • Walkers, Standing Aids and Positioning Systems
  • Vehicle Modifications
  • Service Animals
  • Other approved needs…

The organization provides direct relief to individuals and also works with other children’s advocacy groups; financing contributions like motor coaches equipped for wheelchairs and specially designed playground equipment for disabled children.

Children’s Hemiplegia and Stroke Association (CHASA) – Orthotic Grants – CHASA provides widespread resources for families, including support groups and access to information. The organization is also a source of financial relief, sponsoring aid programs for families affected by hemiplegia.

One CHASA initiative awards grants to pay for medically necessary hand or leg braces not fully covered by conventional health benefits. The organization also administers scholarship funds to advance education among those stricken with hemiplegia.

The Morgan Project – Founded by parents with firsthand experience managing a rare disease, The Morgan Project strives to reinforce caregiver support. In particular, the organization provides vital tools for children with special needs. The Morgan Project maintains listings for equipment and devices, matching available pieces with those seeking such items.

To get help, caregivers first request the items they need, applying though The Project. Once approved, items are cleared for shipping or pick-up, quickly putting them in the hands of those with the greatest needs.

United Healthcare Children’s Foundation – This charitable organization, affiliated with the insurance giant, provides supplemental financial resources for families facing children’s health disorders. In particular, medical grants are available to help pay for health-related care not covered, or only partially covered by traditional commercial insurance. Applicants need not be United Healthcare subscribers to qualify for the benefit, which is limited to $5,000 annually per child.

Government Benefits

The U.S. Government funds various programs, steering financial resources toward those with disabilities. Families impacted by cerebral palsy are eligible for relief from the Federal Government, and may also qualify for state-sponsored assistance. Aid for cerebral palsy comes in the form of direct benefits, grants, scholarships, loans, vouchers and subsidies.

Social Security Disability – This long-standing entitlement program distributes financial resources to those unable to work. Benefits may be temporary or permanent, depending upon the severity and duration of the limitation. Although cerebral palsy cannot be cured, many diagnosed with the disorder lead productive work lives without long-term government assistance. SSDI benefits do furnish a safety net, however, disbursing needed funds to individuals able to verify:

  • Condition is expected to last at least one year
  • Social Security payments have previously been made by applicant or guardian (within the past 10 years)
  • Disorder prevents Substantial Gainful Activity (SGA)
  • Other eligibility requirements…

Supplemental Security Income (SSI) – This supplemental program provides financial resources for disabled and elderly individuals with little or no income. The benefit is funded by general U.S. tax revenues, providing cash for fundamental needs like clothing, shelter and meals. In order to receive SSI payments, applicants must:

  • Demonstrate physical or cognitive limitations
  • Be a U.S. Citizen
  • Show evidence of limited financial resources
  • Anticipate disability to last at least 12 months
  • Meet all other eligibility requirements…

Individuals with Disabilities Education Act (IDEA) – This federal initiative guarantees certain rights to children and young adults with disabilities, including those diagnosed with cerebral palsy. Under Part C of the program, families of developmentally affected children 2 and younger receive early intervention services, laying the groundwork for success in education.

IDEA’s Part B addresses the needs of children and young adults ages 3-21, providing special education and related services for cerebral palsy patients and others needing developmental assistance.

Medicaid and Children’s Health Insurance Program – Medicaid provides affordable health services for families with low incomes. The sweeping program is frequently applied to cover costs related to cerebral palsy, including Early and Frequent Diagnostic, Screening, and Treatment (EPDST) services.

The government agency also helps administer the Children’s Health Insurance Program, aimed at furnishing comprehensive benefits for children in all 50 states. The federal initiative is managed at the state level, so benefits vary from region to region, typically covering:

  • Check-ups
  • Medication
  • Vaccines
  • Imaging
  • Lab and Emergency Services
  • Other medical necessities…

Legal Compensation – Additional financial relief may be available under certain circumstances, providing payments for some individuals diagnosed with cerebral palsy. Injury leading to CP, which could have been prevented, for example, may entitle the patient to compensation. If you believe that this may have been what lead to your child’s cerebral palsy diagnosis, you should reach out to a cerebral palsy lawyer.

These essential resources provide information, guidance and financial help for families facing cerebral palsy.

Cerebral Palsy Support for Families

Community Support Organizations

Upon finding out that their child has CP, parents often have a hard time coping with such a life-changing diagnosis.

Many families affected by cerebral palsy find that joining a support group can be incredibly beneficial.

Organizations that offer emotional, medical and financial support are great ways to help parents feel like they are not alone in this fight.

Whether families attend a local meet-up or join an online group for CP parents, support organizations instill an important sense of comfort and community.

Support communities are a great place for new parents to get tips and advice from those who have already been through many of the early struggles of raising a child with cerebral palsy. By talking with people who have been in your shoes, parents and caregivers will come out feeling more prepared for their family’s future.

Cerebral palsy support groups help to:

  • Relieve stress and frustration
  • Offer hope and an optimistic perspective
  • Let families know that their struggles are not uncommon
  • Find reassurance and understanding
  • Provide a platform to share obstacles and achievements

National Support Groups

There are a number of support groups available across the country. These groups ensure that children and parents in any city have access to the resources they need.

1. March of Dimes

The March of Dimes’ mission is to improve health and wellness for new mothers and babies. Their expansive support community provides a place to share stories through various online discussion boards and forums. They also have a large social network of parents who have experience raising a child with special needs.

If you are feeling overwhelmed in your search for community support, this organization is a great place for parents to start. March of Dimes also connects their members with other parents located in the same part of the country. This is a great way to create a local support system that all parents could benefit from.

2. Cure CP

This organization was founded by two families that were directly affected by cerebral palsy. Motivated by the desire to build a better life for their children, these parents created Cure CP to help fund and support research for cerebral palsy.

Currently, there is no cure for cerebral palsy and this can be frustrating for anyone affected by this disorder. Cure CP specifically supports research geared toward developing a cure and providing hope for the future.

3. Cerebral Palsy Foundation

The Cerebral Palsy Foundation was founded in the 1950s. This organization contributes millions of dollars each year to cerebral palsy research. These studies and clinical trials focus on finding new treatments that increase mobility and improve the overall quality of life for people with CP.

In addition to funding research, the Cerebral Palsy Foundation also campaigns to increase the level of federal support for people with CP. They are leaders in advocating for better educational programs for doctors, nurses and therapists.

4. Reaching For The Stars

This advocacy group primarily strives to increase federal funding for cerebral palsy research. They focus on improving treatment methods used in children with CP and they work endlessly towards finding a cure for this condition.

Reaching For The Stars also founded the “CP Kids Coalition.” This is a group of young people who produce articles and engage in discussions about the issues surrounding transitioning into adulthood with cerebral palsy. This is also a great place for young adults with cerebral palsy to meet other people they can relate to.

Local Support Organizations

Local support groups are established so that families across the U.S. have access to the emotional and medical resources they need.

The organizations listed below all offer affiliate programs in almost every major city in America. To find an affiliate group near you, simply visit their website and provide your location. You will then be given a list of nearby affiliate groups that provide an array of services for both children and adults with cerebral palsy.

1. United Cerebral Palsy (UCP)

The mission of UCP is to educate, advocate and provide support resources for individuals with disabilities. They aim to provide people with any type of disability with the tools to be independent and lead a happy, healthy life. UCP also pushes for the social, legal and technological changes that would make it easier for individuals with disabilities to achieve their dreams.

2. The Arc

The Arc organization was founded in the 1950s by parents of children with an array of developmental disabilities. The experiences they had raising children with special needs is what laid the groundwork for their mission and efforts as an organization. The Arc provides support for families and children with CP across the nation. They offer more than 730 state and local chapters.

3. Easter Seals

Easter Seals is a nonprofit organization that provides services for more than one million children and adults with autism and other disabilities, such as cerebral palsy. They provide support services for medical rehabilitation, residential services, job training, child care, adult day programs and camping/recreation. They aim to provide resources that encourage individuals with various disabilities to achieve their goals.

4. Parent to Parent USA

This non-profit organization was founded in 2003. Their mission is to ensure that families and children with special needs have access to support through their extensive community network. They match experienced, trained “Support Parents” with families in need. Their affiliate groups are typically started by parents of children with disabilities who have been through the process before.

5. Family Voices

Family Voices is a community support organization that promotes quality health care for children and youth with disabilities. They work closely with government leaders and medical professionals at both the national and local levels to ensure that individuals with disabilities have their voices heard.

Online Support Groups

1. Special Needs Moms for Moms

This online community provides a vast social network for parents and families of children with special needs. Members are able to share information through an online forum available on their website. Parents in this group can offer support, organize local meetups and provide inspiration for other families.

2. Mommies of Miracles

Mommies of Miracles is the world’s largest online support organization for mothers of children with disabilities. Mommies of Miracles provides a network of resources, products and services that help inspire and educate mothers. They also work to match up families in the same area as a way to facilitate a local support system.

Playgroups and Summer Camps For Children With CP

Summer camps and playgroups for children with physical and cognitive disabilities are a great option for children with cerebral palsy. These programs help to ensure that children are learning valuable social skills and independence.

Playgroups meet during various times throughout the year and are available in most major U.S. cities. Camps for children with CP are equipped with accessible facilities and experienced staff.

Children in playgroups and camps participate in a number of activities, including swimming, hiking, fishing, crafts, sports and campfires. By taking the focus off of their disability, children with CP can form meaningful friendships and memories.

Finding Support For Your Family

There is no simple way to determine which community support organization is best for you and your family. For example, some parents may choose to opt for an online support group because it provides encouragement from all across the world. On the other hand, some parents may prefer local meet-ups or playgrounds that offer support in their immediate area.

All community support groups offer a network of families who understand the challenges of raising a child with a disability. Whether you’re feeling overwhelmed, confused or excited about a recent milestone, having a group to turn to during these times can make all the difference.

If you still have questions about how to find a support group for your family, try downloading our free Cerebral Palsy Guide. This booklet includes information on support options and much more.

25 Cerebral Palsy Resources You Should Know About

21. CanChild Centre for Childhood Disability Research

CanChild Centre for Childhood Disability Research is a research and educational centre located at McMaster University in Hamilton, Ontario, Canada. Their research is focused on improving the lives of children and youth with disabilities and their families.

22. Cerebral Palsy Alliance Australia

Cerebral Palsy Alliance is an organization that provides family-centered therapies, life skills programs, equipment and support for people living with cerebral palsy and their families.

23. CP Daily Living

Here their goal is to help make the journey easier by helping parents navigate the challenges of CP by letting them know they are not alone.

24. Reaching for the Stars

Cerebral Palsy nonprofit foundation led by parents, with a focus on the Prevention, Treatment and Cure of Cerebral Palsy

25. American Academy of Cerebral Palsy and Developmental Medicine

The AACPDM provides multidisciplinary scientific education for health professionals and promote excellence in research and services for the benefit of people with cerebral palsy and childhood-onset disabilities.

Cerebral Palsy: Resources For Patients and Consumers

General Information

  • United Cerebral Palsy (UCP)
    UCP is an organization dedicating to advancing the independence, productivity, and full citizenship of people with disabilities.
    • My Child Without Limits: What is Cerebral Palsy?
  • Cerebral Palsy Now Foundation
    CPNow is dedicated to improving the lives of people with cerebral palsy and their families.
  • National Dissemination Center for Children with Disabilities (NICHCY)
    NICHCY is a central source of information on disabilities in infants, children, and youth.
    • Cerebral Palsy Fact Sheet
  • Reaching for the Stars
    This nonprofit foundation is led by parents and focuses on prevention, treatment, and cure of cerebral palsy. The organization aims to increase cerebral palsy awareness and research progress.
    • About Cerebral Palsy
  • Centers for Disease Control and Prevention (CDC)
    CDC conducts health science and provides information about many different health conditions and problems.
    • Cerebral Palsy
    • Cerebral Palsy Quiz
  • MedlinePlus: Cerebral Palsy
    MedlinePlus, from the National Library of Medicine, provides a wealth of information and resources for consumers on cerebral palsy and many other health topics.
  • MyChild at CerebralPalsy.org
    MyChild provides comprehensive resources for parents and other caregivers of children with cerebral palsy and other neurological conditions.
    • About Cerebral Palsy: What is Cerebral Palsy?
  • American Academy of Orthopaedic Surgeons OrthoInfo
    OrthoInfo, maintained by the professional society for American orthopaedic surgeons, provides information about treatment and prevention of musculoskeletal conditions and injuries.
    • OrthoInfo: Cerebral Palsy
  • American Academy of Neurology (AAN) for Patients and Caregivers
    AAN’s patients and caregivers site provides comprehensive information on specific neurological disorders.
    • AAN: Cerebral Palsy

Services, Resources, and Support

  • American Academy for Cerebral Palsy and Developmental Medicine
    This organization focuses on the scientific education of health professionals and researchers who treat and study childhood disabilities.
    • Find a health care provider.
  • Reaching for the Stars
    This nonprofit foundation is led by parents and focuses on prevention, treatment, and cure of cerebral palsy. The organization aims to increase cerebral palsy awareness and research progress.
    • Cerebral Palsy Help Center
      Reaching for the Stars’ help center provides a variety of resources, including information, research resources, clinical trial information, recreational resources for children, and access to patient assistance and treatment resources.
  • Children’s Hemiplegia and Stroke Association (CHASA)
  • CHASA provides information and support to families of children who have survived an early brain injury and live with hemiplegia or hemiparesis.

Please note: Links to organizations and information included on this page do not indicate endorsement from the NICHD, the NIH, or HHS.

Children with cerebral palsy are at risk for learning difficulties or intellectual disability. There are many children with CP, though, who do not have any learning difficulties. There are many resources to help you and your child in this area. One such program is Help Me Grow/Early Intervention. This is a program for children birth through 3 years who have been identified as having developmental delays or are at risk for being delayed. This is a program that is operated by every county and the services provided vary from county to county. Help Me Grow can help link your child with therapy either in your home or at a therapy center depending upon the resources in your county. You will also be assigned a Help Me Grow Service Coordinator who can help educate you regarding services in your area and also provide you with information on any child development questions you might have.

Once your child turns 3, they no longer qualify for Help Me Grow services. Make sure that your Help Me Grow Service Coordinator transitions you to “The Board of Mental Retardation/Developmental Disabilities” (MRDD) in your county. Along with a Service Coordinator, MRDD has many programs that can help you and your child.

When your child turns 3, the school system becomes responsible for providing your child with the appropriate therapies and education your child requires to participate to their full potential in the educational system. Each school system is mandated by law to provide education to children with special needs when they turn 3. Every school system has a special needs preschool program for those children who qualify. Children can be referred to this program by family or professionals. The child will receive a “Multi-Factor Evaluation” (MFE) to determine eligibility. Once the child is deemed eligible for the program, educational goals need to be established for the child.

Your child will remain in the special needs preschool until it is time to transition to Kindergarten. The IEP will help make this transition smooth so that the elementary school is aware of your child’s needs and can provide the appropriate accommodations.The parent(s), along with school personnel, meet together to review the results of the MFE and to then develop an “Individualized Education Plan” (IEP). The IEP lists the educational goals for that child for the school year. The preschool program provides all appropriate therapies within the school setting. The IEP is updated every school year, or more often, if the child’s needs change.

The Power of Cerebral Palsy Support Groups

As we have noted in the past, parenting for a child with Special Needs is a daily journey that comes with incredible feelings of joy, but also unique difficulties that can lead to isolation when others fail to understand. One of the services we are major proponents of, both within our community as well as in our resources, is the value of Cerebral Palsy support groups, not only for the commonality they provide, but the information and assistance they can offer.

Cerebral Palsy support groups are a wonderful resource for parents due to the uniquely common experiences that members have with one another. With so little awareness in the world regarding CP and the special challenges parents face each and every day, Cerebral Palsy support groups provide a source of comfort for parents who do, genuinely, understand the feelings and challenges we all face every day. Whether early in a diagnosis or an adult with CP, parents of a child with Cerebral Palsy can become well-versed, through reading and real-life experience, on the complexities associated with this condition.

Cerebral Palsy support groups can often be an effective place for the sharing of information, but not just ideas. We regularly have parents contacting us asking how they can give away (or receive) equipment that their child is no longer a fit for. Within a CP support group, parents often provide advice and techniques, but they also have access to items that would be better off in another person’s home. While charitable groups and empowering organizations (such as ours) can provide help connecting for these items, a fellow parent may be the best way to connect with a product that can help your child tomorrow.

This information, resource and product sharing is important, not only for the suggestions element, but also in the awareness spectrum. We have mentioned the value of Cerebral Palsy awareness before, but there’s also the reality that CP is still a world of developing research, techniques, equipment and more where advances happen at a moment’s notice. Being able to speak with a room filled with parents who may have tried different techniques or equipment may not always yield a silver bullet solution for your child, but it can certainly help with developing a better understanding and suggesting informed questions to ask.

Perhaps most importantly, Cerebral Palsy support groups are amazing in that they help humanize statistics. While roughly one in 300 children is born with Cerebral Palsy, these are still remote numbers. Speaking with fathers and mothers of children with Cerebral Palsy about their daily challenges helps remind parents that they are part of an experience that their friends and family may not understand, but is real for many others.

If you’re a parent of a child with CP who has yet to visit a Cerebral Palsy support group, there is absolutely no reason not to see what they have to offer. Through sharing information, personal experiences, equipment or devices and more, you can avoid feelings of isolation and make a real impact on your child’s life.

For more information on a Cerebral Palsy support group in your area, call (800) 692-4453 FREE to speak with one of our team members about meetings near you, as well as other helpful resources we have available. You can also visit our Cerebral Palsy Facebook Page for daily updates, feedback and more!

Cerebral Palsy Support Groups/Local Resources

The Catalyst Center: An incredible website dedicated to supporting healthcare coverage for children with special medical needs. They have a fantastic family resource page with state by state listings of Parent to Parent organizations and more organizations dedicated to helping families navigate local resources.

United Cerebral Palsy (UCP) has changed their mission to address the issues facing all people with special needs, not just cerebral palsy. They have a fantastic search engine which will allow you to locate all kinds of resources by state and local vicinity. If I find there are organizations missing I will add them to this page.

Wrightslaw Yellow Pages for Kids with Disabilities

Mom2Mom-the online helpline in the US focused on mother’s of special needs children. It is staffed by mother’s of other special needs children 24 hrs a day, 7 days a week. Here is an article about Mom2Mom which is based in New Jersey, and in addition to offering emotional support to callers all over the US, also offers comprehensive information about resources in the state of New Jersey.

211 United National Information and Referral Search

Agencies providing support/emergency funds to special needs families by state & country:

Jack’s Helping Hand-California

Helping From Heaven-Illinois

Children With Special Needs Fund-Michigan

The Cerebral Palsy Outreach Network-Michigan

Share A Smile-Michigan

Catastrophic Illness in Children Relief Fund Commission-New Jersey *medical expenses only

Alleghany County Ministerium-North Carolina

Ten Doves-Texas

Angelgirl Foundation-West Virginia

Mumsnet: London, England

Internet support groups and facebook pages:

Adults with CP and parents are coming together!
There is a new space on Facebook where adults with CP and parents may come together and share ideas, learn from one another, and build a sense of community. I thought some of you may like to check it out. And remember this is a social group where experiences are shared for educational purposes only. Always check with your medical professional and therapeutic team about yours or your child’s specific needs.

New!! A new App called “Candor CP“offers an anonymous way to communicate and share experiences with people who have CP.

CP Teens UK

TeenCP-a facebook page and blog from a teen based in the US who has CP

Charisse Living with Cerebral Palsy-a facebook page hosted by a young adult woman with CP-fabulous!!

Cerebral Palsy Awareness hosted by Sophie-Share your stories, pictures, and experiences.

Cerebral Palsy United Together-an open facebook discussion group

Cerebral Palsy Families-a closed facebook support group

Cerebral Palsy Mommas-a closed facebook support group for moms

Cerebral Palsy Network-a Yahoo group consisting of parents and individual throughout the globe affected by CP.

Mommies of Miracles (MOM)-“The mission of Mommies of Miracles is to eliminate the isolation mothers of exceptional needs children experience on a daily basis by providing an extended network of resources, products & services, grief support, family matching, and hope.”

KidPower-A Yahoo support and information group for families of children mildly affected by CP.

Pumpsters-A Yahoo information and support group for people (and their loved ones) considering using intrathecal pumps.

Special Needs Moms-A social network for moms and families of special needs children to connect and share information (categorized by diagnosis)

For Siblings:

Sibling Support Groups

ForeverSibs-organization dedicated to supporting siblings with rare diseases or disorders

For Dads:

Dadvocates-a page just for dad advocates of special needs children

Fathers of Special Needs Children-Facebook group for dads

Parent to Parent Organizations

Below is a list of state by state (in the US) individual childcare search engines and information, as well as any known parent to parent organizations we have been able to find. Parent to parent organizations can be a wonderful resource for all types of information including daycare facilities and pre-schools that may best suit your child:

Alabama

Childcare Search Resource:

Alabama Childcare Resource

Parent to Parent Organization:

Family Voices Alabama — Family Centered Care for Children with Special Needs

Alaska

Child Care Assistance Program

Child Care Search Resource:

Child Care Resource and Referral Services — Anchorage, Wasilla, Juneau, Fairbanks

Parent to Parent Organization:

Stone Soup Group — Assistance to families of children with special needs.

Arizona

Child Care Search Resource:

Arizona Child Care Resource

Parent to Parent Organization:

Raising Special Kids — Phoenix, Flagstaff, Tuscon

Arkansas

Childcare Search Resources:

Arkansas Division of Childcare and Early Education

Parent to Parent Organization:

Arkansas Disability Coalition

California

Childcare Search Resource:

California Making Access Possible — My congratulations to CA for their commitment to inclusion and the special needs community. This website is an outstanding resource.

Parent to Parent Organization:

Support For Families

Colorado

Childcare Search Resource:

Colorado Childcare Resource

Parent to Parent Organization:

Peak Parent

Connecticut

Childcare Search Resource:

Conn Child Daycare Licensing

Parent to Parent

Parent to Parent Organization:

PATH Parent to Parent Help for Children with Special Needs

Parents Supporting Parents

Delaware

Childcare Search Resource:

Childcare Referral Services

Parent to Parent Organization:

Delaware Family Voices Resource for Parents of Children with Special Needs

District of Columbia

Childcare Search Resource:

DC Childcare Resource Center

Parent to Parent Organization:

DC Advocates for Education

Florida

Childcare Search Resource:

Florida Child Care Resource

Parent to Parent Organization:

Florida Family Network for Disabilities

Parent to Parent Miami

Georgia

Georgia Childcare Search Resource:

Georgia Childcare Search

Fragile Kids Foundation

Georgia Quality Childcare Search

Parent to Parent Organization:

Parent to Parent of Georgia: Supporting Families with Special Needs Children

Hawaii

Childcare Search Resource:

PATCH Hawaii

Parent to Parent Organization:

SPIN Hawaii Special Parent Information Network, Support for Families with Special Needs Children

Idaho

Childcare Search Resource:

Idaho Child Care Resource

Parent to Parent Organization:

Idaho Parents Unlimited

Illinois

Childcare Search Resources:

Illinois Daycare and Early Childhood Resource

Illinois Child Care Resource **This is not a state agency.

Parent to Parent Organization:

Family Support Network

Answers for Special Kids (a.s.k.)

Indiana

Childcare Search Resource:

Indiana Child Care Search

Parent to Parent Organization:

Family Voices

Iowa

Childcare Search Resource:

Iowa Department of Human Services Childcare Search

Center for Disabilities and Development

Parent to Parent Organization:

F.I.N.D.

Kansas

Childcare Search Resources:

Current Kansas Licensing for Childcare

Circle of Inclusion

Childcare Aware of NW Kansas Resources for Special Needs Children

Kansas Learning

Parent to Parent Organization:

Families Together Assisting Kansas’s Parents of Children with Disabilities

Kentucky

Childcare Search Resource:

Division of Regulated Childcare

Cincinnati Children’s: Resources and database for special needs childcare.

Parent to Parent Organization:

Kentucky Special Parent Involvement Network

Louisiana

Childcare Search Resources:

Department of Children and Family Services

Childcare Resources : Southwest, Louisiana

Parent to Parent Organization:

Families Helping Families Support for special needs families

Maine

Childcare Search Resources:

Maine Childcare Licensing

Maine Childcare Search

Childcare and Work Challenges for Special Needs Families

Parent to Parent Organization:

Maine Parent Federation

Maryland

Childcare Search Resource:

Maryland Childcare Resource

Parent to Parent Organization:

Parents’ Place of Maryland

A Pastor’s Place–“Teach parents the importance of taking care of themselves emotionally, physically, nurturing relationships with significant others and being knowledgable advocates for their children.”

Massachusetts

Childcare Search Resource:

Mass Department of Early Education and Childcare

Parent to Parent Organization:

Familiy Ties

Michigan

Childcare Search Resource:

Great Start for Kids :state sponsored resource site, care facilities organized by county, search can include “CP” experience but no guarantee of accuracy here. All providers in this list are licensed by the state.

Parent to Parent Resource:

Michigan Alliance for Families

Minnesota

Childcare Search Resource:

Minnesota Childcare Search

Parent to Parent Organization:

PACER Center

Mississippi

Article on early education for at risk children in the state

Childcare Search Resource:

Mississippi Childcare Search

Parent to Parent Organization:

Project Facess One-stop family support center linking families of children with developmental disabilities with their community

Missouri

Childcare Search Resources:

Missouri Childcare Resource

Missouri Developmental Disability Resource Center

Parent to Parent Organization:

Sharing Our Strengths (S.O.S.)

Montana

Childcare Search Resources:

Montana Childcare Resource

Childcare Connections Gallatin, Park, Meagher Counties. This is a generic childcare search engine.

Childcare Solutions

Parent to Parent Organization:

Parent’s Let’s Unite for Kids

Nebraska

Childcare Search Resource:

Nebraska Childcare Resource

Parent to Parent Organization:

Parent Training Nebraska

Nevada

Childcare Search Resource:

Nevada Childcare Search

Parent to Parent Organization:

Family Ties

New Hampshire

Childcare Search Resource:

New Hampshire Childcare Resource

Parent to Parent Organization:

Parent Information Center

New Jersey

Childcare Search Resource:

NJ Childcare Resource

Parent to Parent Organization:

SPAN Statewide Parents Advocacy Network

New Mexico

Childcare SearchResource:

New Mexico Child Care Resources

Parent to Parent Organization:

Parent’s Reaching Out New Mexico resources for building a better family

New York

Childcare Search Resource:

NY Childcare Resource

Parent to Parent Organization:

Parent to Parent

Parents Supporting Parents

North Carolina

Childcare Search Resources:

NC Childcare Resource

Children’s Resource Center Resource on inclusion

Parent to Parent Organization:

Exceptional Child Assistance Center:a private non-profit organization that is operated by and staffed primarily with parents of children with disabilities and special health care needs

North Dakota

Childcare Search Resource:

North Dakota Childcare Resource This is a state site.

Parent to Parent Organization:

Family Voices of North Dakota aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.

Ohio

Childcare Resource Organization:

Ohio Childcare Resource

Cincinnati Children’s Special Needs Childcare Directory: Resources and database of facilities.

Parent to Parent Organization:

Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.

Oklahoma

Childcare Search Resource:

Oklahoma Childcare Resource

Parent to Parent Resource Organization:

Oklahoma Family Network informs and connects individuals with special health care needs and disabilities, their families and professionals to services and supports in their communities.

Oregon

Childcare Search Resources:

Oregon Child Care Research

OCCYSHN Oregon Center for Children and Youths with Special Health Needs works with communities to more effectively meet the needs of children and their families.

Parent to Parent Organization:

Unknown

Pennsylvania

Childcare Search Resource :

Pennsylvania Daycare Resource

Parent to Parent Organization:

PEAL Center The Mission of the PEAL Center is to ensure that children, youth, and adults with disabilities and special health care needs lead rich, active lives and participate as full members of their schools and communities by providing training, information, and technical assistance based on best practices to individuals, families and all people who support them.

Rhode Island

Childcare Search Resource:

Rhode Island Childcare Resource

Parent to Parent Organization:

Rhode Island Parent Information Network

South Carolina

Childcare Search Resource:

South Carolina Childcare Resource

ABC Special Needs Program Columbia

Parent to Parent Organization:

Family Connections provides you with information, support and hope for the future.

South Dakota

Childcare Search Resource:

South Dakota Childcare Resource

Parent to Parent Organization:

South Dakota Parent Connection connects families caring for children (birth to 26) with the full range of disabilities or special health care needs to information, training and resources in an environment of support, hope and respect.

Tennessee

Childcare Search Resource:

Tennessee Childcare Resource

Parent to Parent or Similar Organization:

Tennessee Disability Coalition An alliance of organizations and individuals who have joined to promote the full and equal participation of men, women and children with disabilities in all aspects of life.

Texas

Childcare Search Resource:

Texas Childcare Resource

Parent to Parent Organization:

Texas Parent to Parent is committed to improving the lives of Texas children who have disabilities, chronic illness, and/or special health care needs.

Utah

Childcare Search Resource:

Utah Childcare Resource

Parent to Parent Program:

Utah Parent Center works to help parents help their children, youth and young adults with all disabilities to live included, productive lives as members of the community.

Vermont

Childcare Search Resources:

Vermont Childcare Resource

Vermont School Readiness for Children with Special Needs

Grants for Special Education in Vermont

Parent to Parent Organization:

Vermont Family Network promotes better health, education, and well-being for children and families, with a focus on children and young adults with special needs.

Virginia

Childcare Search Resource:

Virginia Child Daycare Search

Parent to Parent Organization:

Parent to Parent Virginia believes in the innate strength of most families. Therefore, we have a philosophy that our services should affirm parents’ strengths and enable parents to obtain for themselves the services and supports their families need.

Northern Virginia CP support group-parent run: http://cerebralpalsysupportgroup.org/

Washington

Childcare Search Resource:

Washington Childcare Resource

Parent to Parent Organization:

PAVE a non-profit organization, exists to share information and resources with people whose lives are linked to children and adults with disabilities.

West Virginia

Childcare Search Resource:

West Virginia Early Childcare and Education Directory

Parent to Parent Organization:

WVPTI Works to empower parents of children and youth with disabilities in their roles as parents, decision makers, and advocates for their children and to promote partnerships among parents and professionals.

Wisconsin

Childcare Search Resource:

Wisconsin Child Care Directory

Parent to Parent Organization:

WI FACETS-Milwaukee

Parent 2 Parent-statewide

Collaborating Partners

Wyoming

Childcare SearchResource:

Wyoming Early Childhood Programs

Parent to Parent Organization:

Parent Information Center Statewide parent center for families of children with disabilities.

Cerebral palsy support groups

There are a number of charities and organisations that cater specifically for people with cerebral palsy and their families. They offer a range of services including therapies, support and advice.

SCOPE

SCOPE is a large charity founded in 1952 that provides free information and advice along with support services to disabled people, their families and carers. It exists to make the UK a place where disabled people have the same opportunities as everyone else.

The Silverlining

The Silverlining is a charity dedicated to helping people with brain injuries to organise and participate in fun activities and challenging events that reduce isolation, develop skills and boost confidence. Their local membership networks are free to join and open to friends, families and carers.

Bobath Centre

The internationally recognised Bobath Centre provides tailored therapy for children with cerebral palsy and other allied neurological conditions. Their aim is to help children to be healthy and active so that they can participate in everyday life to the best of their ability.

They share their building with the Bobath Centre for Adults with Neurological Disability that includes treatment of neuro-developmental conditions in adults, including cerebral palsy.

BIBIC

BIBIC helps children and young people with neurological and genetic conditions, including cerebral palsy, to reach their full potential. This includes support with gross motor skills, fine motor skills, vision, language comprehension, expressive language, social skills, independence, cognitive skills, sensory processing, memory and auditory processing and academic skills. BIBIC also offers support to children and young people’s families and carers.

National Institute for Conductive Education (NICE)

Conductive Education is a learning method that helps children and adults with neurological conditions to overcome their physical challenges with less reliance on aids and adaptive settings.

It approaches the rehabilitation of people with motor disabilities from an educational perspective, rather than a medical perspective, focusing on the link between the mind and body and the importance of developing the motivation, confidence and intention required to achieve their physical goals.

Conductive Education is usually delivered in a full-time school setting and intensive holiday sessions for children, or intensive or weekly classes for adults.

Website: www.conductive-education.org.uk
Email: [email protected]
Telephone: 0121 449 1569
Address: Cannon Hill House, Russell Road, Moseley, Birmingham, West Midlands
B13 8RD

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