What to do next when your child has been diagnosed with cerebral palsy

Top resources for finding accurate medical information on cerebral palsy

Resources written for the general public

• Medline Plus: Cerebral Palsy
• National Organization for Rare Disorders (NORD): Cerebral Palsy 

Science-heavy resources targeted at clinicians:

• National Library of Medicine Cerebral Palsy - StatPearls
• OMIM Cerebral Palsy

How is cerebral palsy classified?

Because cerebral palsy is an umbrella term covering a wide range of experiences, doctors use a classification system to describe each child's specific presentation. This classification shapes which specialists your child will need, which therapies are most relevant, and what milestones to watch. There are 2 main classifications:

1. Movement type (what does the muscle tone or movement look like?)
   
   • Spastic: Muscles are stiff or tight; movements may be jerky or difficult to control. Most common type
   • Dyskinetic: Involuntary, uncontrolled movement; muscle tone fluctuates
   • Ataxic: Affects balance and coordination; movements may appear shaky or unsteady
   • Mixed: Features more than one type
2. Body distribution (which parts of the body are affected?)
   
   • Hemiplegia: one side of the body (one arm and one leg)
   • Diplegia: primarily the legs, with the arms less affected
   • Quadriplegia: All four limbs, often with the trunk and face, are also affected
   • Monoplegia/triplegia: one limb, or three limbs (less common)

What causes cerebral palsy?

Cerebral palsy can happen for many different reasons, and in many cases, no single cause is ever identified. Causes are generally grouped by at what stage of development the brain injury or difference occurred:

Before birth (congenital):

• Disruptions to normal brain development during pregnancy
• Infections during pregnancy (such as rubella or cytomegalovirus)
• Stroke or reduced blood flow to the fetal brain
• Exposure to toxins
• Maternal medical conditions (such as thyroid problems or seizures)
• Genetic factors (see below)

During or around birth:

• Low oxygen during labor or delivery
• Premature birth (the earlier a baby is born, the higher the risk)
• Low birth weight
• Complications during delivery

After birth (acquired):

• Brain infections (such as meningitis or encephalitis in early childhood)
• Severe or untreated jaundice (yellowing of skin or whites of eyes)
• Head injury in the first years of life
• Stroke in infancy

Not finding a specific cause is very common and it doesn't mean there are no answers yet to be found. More importantly, it doesn't change how your child is cared for day to day. The focus stays the same: the right therapies, equipment, and support for your child and your family (see section 3).

Should I get a second opinion for a cerebral palsy diagnosis?

Complex neurodevelopmental diagnoses benefit from specialized expertise. Consider seeking a second opinion from a pediatric neurologist or specialist with experience in cerebral palsy. A fresh perspective can confirm the diagnosis, reveal additional treatment options, or simply provide reassurance about your care plan.

What does a genetic counselor do when my family has received a cerebral palsy diagnosis?

Certified Genetic Counselors have completed a program of study focused on understanding and providing information about genetic disorders. A genetic counselor can help you understand whether genetics may play a role in your child’s CP, discuss testing options, and advise whether testing is recommended for siblings or other relatives. 

Genetic counseling can take place in person or in a telemedicine visit. The National Society of Genetic Counselors offers a tool for finding a genetic counselor.

Should other family members undergo genetic testing for cerebral palsy?

Most cases of cerebral palsy are not caused by an inherited genetic condition. However, genetics can play a role in some children, particularly those with CP related to abnormal brain structure or development that occurs before birth. In these cases, a genetic variant may have affected how the brain formed, even if there is no family history of cerebral palsy.

Advances in genetic testing mean that an underlying genetic cause is now identified in a growing number of children with CP. Estimates range from roughly 10–30% depending on the population studied and type of cerebral palsy. If your child has had genetic testing that identified a specific gene variant, your child's care team or a genetic counselor can help you understand what that means for your family.

What symptoms should we monitor for cerebral palsy? 

Children with cerebral palsy can experience a wide range of symptoms, and these can vary significantly from one child to another. These symptoms include:

• Challenges with movement and coordination, such as stiff or tight muscles, exaggerated reflexes (spasticity), floppy or low muscle tone (hypotonia), jerky or involuntary movements, or difficulty with balance and posture. 
• Musculoskeletal complications, such as spine alignment (like scoliosis), hip stability, or growth differences.
• Parents may also notice delays or differences in motor milestones like rolling, sitting, crawling, or walking. Some children favor one side of the body when reaching or moving, walk on their toes, or have a scissoring gait (legs crossing while walking).
• Other things that your healthcare provider might discuss are seizures, feeding and swallowing difficulties, speech or language delays, vision or hearing problems, and learning or behavioral differences. 

What is the expected progression of cerebral palsy?

• Although cerebral palsy is a lifelong condition, the underlying brain injury does not worsen over time, meaning CP is considered non‑progressive. 
• However, a child’s symptoms and support needs can change as they grow. For example, muscle tone differences may become more noticeable as movement demands increase, and secondary issues, such as joint contractures, hip displacement, or scoliosis, may develop without proactive management. 
• Some children may gain skills with therapy, adaptive equipment, and appropriate interventions, while others may experience new challenges, especially during growth spurts. 
• Because CP affects each child differently, the trajectory is highly individualized, and early, consistent therapy and coordinated care can optimize function and quality of life throughout childhood and adulthood.

What treatments are available for cerebral palsy? 

• Treatment for cerebral palsy is tailored to each child’s needs and typically includes a combination of therapies, medical interventions, and supportive equipment. Core treatments often involve therapies (such as physical therapy, occupational therapy, and speech‑language therapy), and we discuss these in more detail in Section 3. 
• For children with high muscle tone or spasticity, treatment options may include oral medications, botulinum toxin injections, intrathecal baclofen therapy, or orthopedic interventions. 
• Some children may also benefit from surgical procedures to address musculoskeletal complications or persistent tone issues. 
• Although there is no cure for CP, these therapies and interventions can significantly improve comfort, function, and participation in everyday life.

What healthcare providers should be on my child's care team for cerebral palsy?

Your child may benefit from specialists beyond neurology, such as a physiatrist (rehabilitation medicine), gastroenterologist (focusing on the digestive system), cardiologist (the heart), pulmonologist (the lungs), or orthopedic specialist (the musculoskeletal system). Ask your doctor which specialists should be part of your child's care. 

Therapeutic providers, such as a physical therapist (mobility and motor skills), occupational therapist (daily living skills and fine motor development), speech-language pathologist (communication and feeding), or behavioral therapist (supporting emotional regulation and adaptive behavior), are equally important members, supporting your child's development, communication, and daily functioning. Ask your doctor which providers make sense for your child's specific needs. For a deeper look at therapeutic services and how to access them, see Section 3.

Finding clinical trial opportunities & supporting research into cerebral palsy

When you participate in research, you help your child and other families in the future. Medical research studies can be very different from each other. Some test new treatments, while others are "natural history studies" that just collect information about a disease’s impact over time. 

Clinical trials are research studies that help doctors find new treatments. Some trials test new medicines or therapies that aren't available yet. Even if you may choose not to participate, it can be good to know what options exist for your child's condition. Your child's doctor or disease organization can help you find trials that might be a good fit. The U.S. government also maintains a registry at clinicaltrials.gov; you can filter by “cerebral palsy,” age, and location.

Natural history studies are designed to help researchers learn more about the condition. This information is important for creating future treatments. Traditional natural history studies can involve additional medical appointments over the course of several years.

Patient registries collect health information from people with specific diseases to help research move faster and connect families with clinical trials. Registries also show researchers and drug companies that families are engaged and want to help develop new treatments, which can bring more funding and research attention to a disease. Some diseases have more than one registry you can join. Patient Advocacy Groups typically establish and maintain patient registries for specific diseases. (See Section 5 below to learn more).

Organizing and maintaining your child’s medical records for cerebral palsy

Patients with CP see many different doctors, often across different medical and technological systems that may not talk to each other. Unfortunately, that means the burden often falls on caregivers to track care holistically, identify “gaps,” and make sure nothing gets missed. Keeping your records as organized and centralized as you can from early on is likely to improve your ability to manage your child’s care down the road.

You can start by creating a one-page sheet with your child's diagnosis, current medications, allergies, and emergency contacts. Bring this sheet to every appointment. It can really help in emergencies or when you see a new doctor.

Many caregivers establish one (or several) records binder(s) in which they keep track of appointments, medication updates, symptoms, and other ongoing medically relevant information.

We also encourage caregivers to consider Citizen Health’s free tools for centralizing, managing, accessing, and extracting key information from health records. Our system will collect all your health records, across doctors and health systems, making them available on our secure online platform that can provide answers in real time based on questions you ask (like “What medications has my child been prescribed in the past year?” or “When did we last see an orthopedist?”) 

As a company built by caregivers, we aim to overcome the need for physical records binders. But ultimately the important question is what works for you and your family.

Every state has an early intervention program, and you can ask for an evaluation even if your child doesn't have a formal diagnosis yet. In some states, early intervention programs are called “birth to three”, “early steps”, or “first steps”. 

It’s never too early to search for early intervention services in your state. Learn more from ECTA, the Early Childhood Technical Assistance Center.

3 & up: School services for children with cerebral palsy

IEPs and 504 plans

When your child turns 3, they move from early intervention to school-based services. An Individualized Education Program (IEP) is a legal document that describes the special instruction, therapies, and support your child needs to learn at school. 

A 504 plan provides accommodations for students who don't need special instruction but need support because of a disability. Understanding your rights and these plans helps make sure your child gets the right services throughout their school years. 

Communicating with your school

Building a good relationship with your child's school team is important. You know your child better than anyone, and that knowledge is incredibly valuable. Come to meetings prepared with information about your child's needs, share your concerns and hopes openly, and never hesitate to ask questions if something isn't clear. 

You are an equal and essential member of this team. Other members of your CP community can also be valuable resources for navigating your child’s school experience. 

Assistive devices and equipment for cerebral palsy

Depending on your child's needs, assistive technology and adaptive equipment can help with independence, communication, and quality of life. This might include communication devices (Augmentative and Alternative Communication or AAC), mobility equipment (orthotics, walkers, wheelchairs), positioning supports, or adaptive seating. Your therapists can recommend the right devices, and many are covered by insurance or available through school programs.

Some devices and equipment can be expensive but can very often be covered by insurance. If coverage is denied, be sure to talk to your doctors about writing an appeal letter or a Letter of Medical Necessity. These documents can be critical for getting insurance coverage for devices and equipment. 

Managing tone and musculoskeletal health

For many children with CP, managing muscle tone is an ongoing part of care. There are a range of options your child's care team may discuss with you; from therapy-based approaches to medications and, in some cases, surgical interventions. Your child's neurologist, orthopedist, and therapy team will work together to recommend what makes sense for your child's specific needs and goals.

Respite care

Caring for a child with complex medical needs is hard work, and taking breaks is important for your health and your family's wellbeing. Respite care provides temporary relief, giving you time to rest, handle other responsibilities, or just recharge. Options range from a few hours with a trained caregiver to overnight or weekend programs. 

Respite isn't a luxury. It's a necessary part of taking care of your family long-term. The non-profit Access to Respite Care and Help (ARCH) provides guidance on how to find a respite care provider.

Building your support systems as a cerebral palsy caregiver

Being a caregiver to a child with cerebral palsy is a heavy responsibility.  You can't do it alone, and you don’t have to. Building a network of support including family, friends, medical providers, therapists, other parents, and community resources, creates a safety net for hard days as well as people to celebrate victories with. 

When asking for help, it helps to be specific: people want to support you but often don't know how. Whether it's meals, watching your other children, or just someone to listen, letting others help is good for everyone.

Don’t forget about support for other family members! If your child has siblings check out the Sibling Support Project.

A program called Katie Beckett or TEFRA waivers allows children with disabilities to qualify for Medicaid based on their own income rather than family income. Additionally, children with significant functional limitations may qualify for Supplemental Security Income (SSI), which provides monthly payments and often automatically qualifies them for Medicaid. These programs can provide crucial coverage for therapies, equipment, and services private insurance won't cover. 

Learn more about Medicaid in your state through this interactive map from NORD.

ABLE savings accounts for cerebral palsy

On that note, if your child qualifies for SSI, they may also be eligible for an ABLE (Achieving a Better Life Experience) account. ABLE accounts are tax-advantaged savings accounts specifically designed for people with disabilities that are opened in a child’s name but do not count against the $2,000 asset limit that typically applies to programs like SSI and Medicaid. Find out more at ablenrc.org.

Understanding your insurance coverage for cerebral palsy

What’s covered

• Your insurance policy determines what services, therapies, equipment, and medications are covered for your child. Start by reading your plan documents to understand your benefits, deductibles, co-pays, and out-of-pocket maximums. Call your insurance company's customer service or case management department as many insurers assign case managers to children with complex medical needs who can help you understand your coverage. 
• Don't assume something isn't covered until you've asked. Many families are surprised to learn what benefits are available when properly documented. 
• Keep notes of every call you make, including the date, time, person you spoke with, and what they said. This documentation can be very helpful later.
• Most children’s hospitals also have a financial counselor or patient navigator who may be able to help with insurance or financial coverage issues.

Therapy & rehabilitation

• When considering insurance coverage for therapies and rehabilitation services, make sure to see if your plan has a cap for the number of therapy visits per year. Many children with complex needs will exceed that cap and appeals or additional insurance coverage plans may be needed. 

Medical equipment

• If your child needs durable medical equipment such as a wheelchair, walker, orthotics, or at home equipment, getting insurance coverage for that equipment will likely require prior authorization or a letter of medical necessity. It's important to know that this is often an ongoing process, not a one-time hurdle. As your child grows, equipment will need to be replaced or updated, and each new request may require going through authorization again. Keeping records of previous approvals and your doctor's supporting documentation can make future requests faster and easier.

Denials & appeals

• Insurance companies often deny coverage for therapies, equipment, or medications at first but denials can often be overturned with the right documentation. If coverage is denied, you have the right to appeal, and many families win their appeals. 
• An effective appeal letter includes: your child's diagnosis and how it affects their daily life, specific medical reasons from doctors explaining why the service or item is necessary, references to your insurance policy language that supports coverage, research or medical guidelines supporting the treatment, and a clear request for reconsideration. Many patient organizations and hospital financial counselors can help you write strong appeals. You can even appeal multiple times, and many families win on their second or third attempt. You're advocating for your child, and persistence often pays off.

Finding and connecting with families who have walked in your shoes can be life-changing. Other parents navigating the same diagnosis can offer practical advice, emotional support and hope based on their shared experience. They can understand the daily challenges and the victories, big and small, in ways that others can’t. Disease-specific communities often become a lifeline and a source of hope that remind you that you are not alone. 

Local cerebral palsy support groups

Your neurologist or other healthcare provider may be able to connect you with local families in your area. It is totally appropriate to ask your providers if they know of any local families who might be willing to connect with you for a phone call or even a play date.

Patient advocacy groups (PAGs) specific to cerebral palsy

Patient advocacy groups exist for many disorders and serve as a central hub for connections, reliable information, research updates, and advocacy efforts. These organizations work to advance research, improve care standards, raise awareness, and support families. They often host conferences, maintain family directories or registries, fund research, provide educational resources, and fight for policies that benefit the community. 

An example is United Cerebral Palsy (UCP): one of the largest and most established patient advocacy organizations for cerebral palsy in the United States, with a nationwide network of local affiliates providing direct services to individuals and families, including early intervention, therapy, family support, respite care, and advocacy. Their affiliate finder can connect you to programs and resources in your own community. Visit them at ucp.org.

Disease-specific conferences and events

Many patient advocacy groups will help spread awareness through conferences and events. These can include in-person events or online events and are great opportunities to connect with others and to stay on the cutting edge of new research opportunities. 

​​Attending a conference focused on your child's condition can be transformative. These gatherings bring together families, researchers, doctors, and advocates in one place. You'll hear about the latest research, learn from medical experts, meet families at different stages of the journey, and let your child connect with others like them. 

Many families describe their first conference as the moment they felt less alone. While attending may require travel and expense, many organizations offer scholarships or financial assistance to help families participate. If you can go, it's often worth it.