When a child is diagnosed with cerebral palsy or another disability, parents may wonder what types of costs they should expect to confront in the coming years. Our Cost Guide can help your family break down financial matters, learn about what resources and care your child may need, and better understand how to mitigate costs. Join us as we take a closer look at the costs associated with different disabilities and dive deeper into explaining how costs accumulate over a child’s lifetime.
HOW DID WE CALCULATE THESE NUMBERS?
Most of the numbers we present in this cost analysis are estimates and averages, not exact figures. When available, we extracted averages from research articles or governmental websites (such as the Bureau of Labor Statistics). We also also gathered numbers from cost projections that our financial experts provided, and relied on blogs and popular cost-comparison websites to fill in the gaps. Our aim is to consolidate the available information into a single guide for families to use as they prepare their financial plans. You may also notice that some of the prices given do not have citations; these numbers are averages and estimates taken from prices listed by several manufacturers, providers, and planners. Others, particularly those reported as “lifetime costs,” reflect medical malpractice settlement amounts for children who have cerebral palsy as the result of a birth injury (during litigation, anticipated expenses are broken down into categories).
Overall, this piece is meant to give parents of young children with cerebral palsy and other complex health needs a general sense of the expenses they might incur – not to provide an exact budget. Costs associated with treating and managing cerebral palsy vary widely depending on an individual’s needs, lifestyle, and preferences.
Equipment and Technology
Surgeries and Medical Procedures
Other Financial Considerations
Bone mineral density
Incidence of pressure sores
It is not impossible to convince insurance companies to cover standing wheelchairs, but it can be very difficult. Some people obtain standing wheelchairs and other items Medicare may be reluctant to provide from nonprofits (like the Stand Up and Play Foundation), churches, etc, or from assistive technology lending libraries/exchange programs (see this list from the adaptive equipment company Rifton). However, funding/availability may be limited and many end up going without.
Even items that insurance may cover, like power wheelchairs, can still have very high copays. The cost of power wheelchairs averages out at a little over $7,000 (http://health.costhelper.com/wheelchair.html). Medicare will pay 80% of what it considers “durable medical equipment” (power wheelchairs should fall under this category). So, that still leaves almost $1,500 as the responsibility of the wheelchair user/their family. Moreover, Medicare will replace power wheelchairs once every five years, more frequently only under extenuating circumstances. However, individual replacement needs may be closer to every three years (Novak et al. 2012), and even if every five years is acceptable, the copays for replacements can add up. It is perhaps not surprising that a survey of American adults revealed that one in three people who needed new adaptive equipment were unable to obtain it (Bingham and Beatty 2003 as cited within Novak et al. 2012), and that parents of children with cerebral palsy often struggle financially (Brehaut et al. 2004 and Honeycutt et al. 2003 as cited within Novak et al. 2012).
Children with cerebral palsy may need a range of medical equipment. The following are some of the most common types. Medicare and private insurance companies will likely cover some, but not all, of the expenses associated with these devices:
Baclofen is a drug used to reduce spasticity and muscle tightness. It can be taken orally, or through a pump that administers baclofen directly to the spine. The latter is generally thought to have fewer negative side effects because the dose needed to produce the desired effect in the spine is lower. The baclofen pump is placed under the skin in the abdominal area, and wirelessly programmed to deliver baclofen to the spine. The total cost of getting and maintaining a baclofen pump for a year amounts to about $28,500, though the cost should go down in subsequent years (Postma et al. 1999)
Many children with cerebral palsy have hearing impairments, and may require hearing aids. These can cost thousands of dollars for each ear, and require replacement about once every five years. Cochlear implants might also be necessary, and these cost upwards of $40,000. (http://www.asha.org/public/hearing/Cochlear-Implant-Frequently-Asked-Questions/). For more information on cochlear implants see “Surgeries and Medical Procedures.”
Vision problems are also often associated with cerebral palsy. Some children have strabismus, or “cross-eyes,” which can result in issues with depth perception. Others may have problems like myopia (nearsightedness), hyperopia (farsightedness), or an astigmatism (difficulty viewing both very close and very far away objects). To combat these issues, children with cerebral palsy may need vision-related equipment such as glasses (which may cost upwards of $450/year) or corrective lenses (which may cost upwards of $900 per year)(https://www.eyecarecs.com/the-cost-of-eyeglasses-vs-contact-lenses/). Surgical interventions may also help; please see “Surgeries and Medical Procedures,” for more info on this.
Children who are severely affected by cerebral palsy may require tube feeding. Each year, this costs about $12,000 (Papadopoulou and Sullivan 2016). Costs can also increase greatly if there are tube-related complications. For example, many children frequently pull their feeding tubes out, and they have to be replaced. If this happens often enough, they may need to switch from a nasogastric tube, which is inserted through the nose, to a gastronomy tube, which is inserted directly into the abdomen. This involves additional surgery costs (https://notube.com/additional-topics/how-much-does-it-cost-to-have-a-child-with-a-feeding-tube-2) .
Cerebral palsy also commonly causes seizures. One treatment for seizures is the vagus nerve stimulator. This is a device that is implanted in the chest and wound around the vagus nerve in the neck. It sends pulses of electrical energy to the brain, and can prevent seizures from occurring. Including the implant and surgical procedure, vagus nerve therapy costs about $20,000 (https://epilepsychicago.org/epilepsy/treatment/vagus-nerve-stimulation/cost-of-treatment/).
Children with cerebral palsy may require breathing aids due to a number of factors, including muscle weakness, prematurity-related conditions, and organ system impairments. Some breathe through a ventilator. On average, ventilators cost about $6,000 (not including associated care costs) (https://www.medicalpriceonline.com/medical-equipment/ventilator/).
VAGUS NERVE STIMULATORS
HEARING AIDS AND
Home modifications can help children and adults with cerebral palsy to live safely and comfortably, and to become more independent. These modifications may involve both easy add-ons that can make a big difference, as well as larger structural changes to a home. Some examples of home modifications include:
Home modifications on average may cost $50,000-$100,000. However, expenses will vary widely based on the needs of the individual. It is important to note that some parents of children with cerebral palsy choose to move in order to have better access to specific resources their child needs, such as quality special education programs. In these cases, they may take accessibility into account when purchasing a home. For example, they may look for a ranch rather than a multi-level house. This may cut down on the cost of modifications, but there are also expenses associated with moving.
Home modification is expensive, but there are certain grants and other resources that may be available to help defray the cost of making a home accessible. Title I Property Improvement Loans are loans set aside specifically for rehabilitating old properties and improving livability, Section 203(k) Rehabilitation Loans help to finance or refinance home purchases, the Housing Choice Voucher Program (formerly known as Section 8 Vouchers) provide subsidies for low-income individuals seeking housing, and certain federal assistance programs may be able to help defray the cost of accessible housing. The goal of the Home Accessibility Tax Credit (HATC) is to help defray the cost of accessibility renovations by providing a reimbursement of a portion of your tax burden. The United Spinal Association has a comprehensive accessible home guide parents may find useful.
Some children and adults with cerebral palsy also require modified vehicles. New wheelchair-accessible lift vans
cost approximately $40,000-$70,000, and will need to be replaced about as frequently as any other car. Some people
choose to adapt a vehicle they already own: this can cost closer to $15,000. Another option is purchasing a used
accessible van. The cost of this will vary widely depending on mileage, and the type of vehicle, etc.
For drivers with cerebral palsy, adaptive driving systems may also be required. Some examples include foot steering
systems (about $3,000), low-effort steering systems (about $300), one-hand control systems (about $260) and knob steering (about $50).
Vehicle dealerships, mobility organizations, and other groups may be able to help you pay for vehicular modifications:
This non-profit association of mobility professionals partners with individual dealerships and provides financing info to make accessible vehicles more affordable.
The Association for Driver Rehabilitation Specialists provides a searchable database of medical and mobility equipment providers on their site.
(full threshold doorways)
A way for visitors to communicate with the resident (intercom, etc.)
Total remodel of bathroom for rolling out of shower, ramps
Remote controls for heating, cooling, doorbells, etc
Lowering countertops, windows, etc
Motion detector for lights
Garage extension (for conversion van)
Installing bars and handholds
Easy-to-use hardware (keyless locks, touch handles, etc.)
Removal of steps
Personal care aides (PCAs): PCAs generally are not trained in providing medical care, but they can assist with custodial, supportive, and long-term care services like cleaning, cooking, running errands, and companionship, as well as personal care services such as bathing, grooming, and ambulation. PCAs and other assistants (such as home helpers or non-certified aids) may not necessarily have a certification or license, though (depending on individual state regulations) some may. Often, these are private duty hires or are part of non-medical home care agencies. Personal care aids cost, on average, $20/hour, or $174,720/year for 24/7 care.
Home health aides (HHAs): Home Health Aides can help individuals with the activities of daily living (such as bathing, dressing, and toileting), and assist in changing simple dressing and take vital signs. The key difference between an HHA and a PCA is that HHAs provide medically-focused care, while PCAs do not. Depending on the state, HHA certifications can vary. Often, HHA certification is taken as part of a CNA course. Sometimes HHAs are covered by insurance. Home health aids cost, on average, $20.50/hour, or $179,088/year for 24/7 care.
Certified nursing assistants (CNAs): In addition to the work provided by a PCA or an HHA, CNAs can assist in medical-related tasks under the supervision of a nurse (an RN or nurse practitioner). These tasks can include setting up medical equipment, observing patients, cleaning catheters, controlling infections and administering certain needed treatments. CNAs go through state-approved training, which includes HHA training. Certified nursing assistants cost, on average, $22/hour, or $192,192/year for 24/7 care.
Licensed Practical Nurses (LPNs)/ Licensed Vocational Nurses (LVNs): This nursing staff classification provides basic medical and nursing care. This can include checking blood pressure, changing catheters, reporting health changes to supervisory staff, and similar tasks. Usually, LPNs and LVNs have one year of training and a certificate. These staffers report to an RN or other highly-certified medical staffer. Licensed practical nurses cost, on average, $43/hour, or $375,648/year for 24/7 care.
Registered Nurses (RNs): Registered nurses have a two-to-three year degree as well as a nursing diploma. These individuals often supervise the care provided by caretakers with less training, such as LPNs. Registered nurses cost, on average $55/hour, or $480,480 per year for 24/7 care.
Physical therapists help patients to improve movement and strength through training exercises, massage, and other activities. Individual physical therapy sessions range in price from about $50-$350.
Cognitive behavioral therapists can help children learn to more effectively manage emotions like anger, stress, and disappointment. Cognitive behavioral therapy sessions range in price from about $125-250.
Occupational therapists help patients with physical, cognitive, or emotional disabilities to do daily work and personal tasks. Occupational therapy sessions range in price from about $50-400. However, some occupational therapy may be provided by public schools.
Many children with CP have oral-motor dysfunction, which means that they may experience difficulty in swallowing and breathing. Respiratory therapists can work with these children and suggest interventions that may help them breathe more comfortably and safely. Services provided at respiratory therapy appointments vary greatly in nature, as do their costs. For an example cost breakdown, visit this page: http://www.nationwidechildrens.org/price-information-list
People with mild-moderate cognitive impairment often also struggle with anxiety and depression. Managing life with physical impairments can also be frustrating and lead to emotional problems. Children with cerebral palsy may benefit greatly from therapy sessions with a psychologist. These range in price from about $75-$100 (https://www.goodtherapy.org/blog/faq/how-much-does-therapy-cost).
Appointment cost estimates from http://health.costhelper.com/, unless specified otherwise.
Dozens of alternative therapies are available to people with cerebral palsy. Prices vary widely. To find out if your insurance plan covers alternative therapy, you may need to contact your insurance company, call local providers, inquire about additional costs, and negotiate coverage.
Speech problems are common in children with cerebral palsy, and speech language pathologists may be able to help some to communicate more effectively. Speech therapy sessions range in price from about $100-$250. Fortunately, like occupational therapy, public schools may provide some speech therapy sessions.
Children whose cognitive function is affected by cerebral palsy may need tutors and other types of special educators. Tutors with limited experience may charge about $20-$40/hour, but educators with specialized training to tackle specific learning challenges may charge closer to $60-$200.
Many children with cerebral palsy are hearing impaired and/or nonverbal. Sign language classes can make a substantial difference when it comes to their ability to communicate. The cost of these classes can vary greatly depending on whether they are individualized or group classes, online or in person, etc.
Children with cerebral palsy often experience difficulty with eating and digesting food. Dieticians can help parents find foods their children can tolerate that are also nutritious and may improve their overall health. A consultation with a dietician is usually about $100-$200, with follow-up visits costing about $50-$150
Parents of children with cerebral palsy will likely end up paying for the services of other specialists, surgeons, and doctors. The cost of consulting with them will often be lumped into a hospital bill that also includes equipment, medication, etc. Here are a few examples:
For more information on the surgical and medical procedures themselves, please see the “Surgeries and Medical Procedures” section.
Medicare and private insurance companies may cover a portion of the costs associated with paying for in-home care and appointments with therapists and other specialists – if these services are deemed medically necessary. However, the number of hours of in-home care they will cover is limited. Also, people who only require assistance with personal care activities (dressing, bathing, etc) do not qualify for Medicare services. Physical, speech, and occupational therapy may be covered, but not always; again, it depends on what insurers consider a medical necessity. Therapy is typically limited to a number of sessions that will be covered. Funding for tutors and other educators may be available through non-profit organizations, but for extensive, personalized educational services, parents will likely have to pay out-of-pocket.
Esophageal manometry, esophageal acid testing, swallow studies, ultrasounds, abdominal angiograms, biopsies, blood tests, EEGs, EKGs, MRIs, CT scans, X-rays, renal scans, scoliosis surveys, urinalysis, and more.
These may include visits to and evaluations by neurologists, neuropsychologists, gastroenterologists, psychiatrists, urologists, dentists, dermatologists, opthamologists, pulmonologists, endocrinologists, cardiologists, ENTs, degutologists, and more.
Important Notes and Disclaimers For This Section
It is important to note that the numbers provided in this section are average estimates; home care prices vary significantly depending on location, the patient’s needs, hours of assistance needed, overtime costs, quality of care, and more. Additionally, costs are subject to inflation.
Some parents assume all or some of the work caring for their child’s medical needs. In these cases, the amount they pay for home health care may be very low, but their own loss of salary may have a substantial impact on their financial well-being. For more information about loss of salary, please see “Other Financial Considerations.”
Some parents choose to put their children in skilled nursing facilities as opposed to hiring assistance within their own homes. Some facilities may cost anywhere from $65,000 to $170,000 per year. Another option is special needs day care programs (available for adults as well as children). These range in price from about $7,750 to $32,500 per year (https://www.care.com/c/stories/10266/special-needs-care-for-adult-children-cost-of-care/).
Children and adults with cerebral palsy often may require in-home caretakers, appointments with experts, and support from other doctors and specialists. Compensating these people can make up a large portion of the expenses associated with caring for an individual who has cerebral palsy. Some of the people you may end up paying for support services include:
Depending on the severity of a child’s cerebral palsy, surgical and medical interventions may be warranted to help improve the child’s quality of life and/or general health. These interventions are usually major medical decisions, and the relative risks and benefits must be weighed carefully with the assistance of a medical professional. Usually, parents are encouraged to try combinations of other interventions first before surgical intervention, including therapies, medication regimens, orthotic devices and adaptive equipment. For certain cerebral palsy-related health conditions, however, surgery may be warranted. It is important to note that these interventions can require significant post-operative aftercare and rehabilitation care, and, depending on a family’s unique circumstances, routines will need to be adapted to ensure the child or adult recovers. These needs impact the overall cost of surgery. Patients will require lifelong care for their cerebral palsy; many people with CP experience complications as they age as a result of their condition. While surgery and medical intervention may be a significant financial investment, the majority of the procedures can often be, at least in part, covered by insurance.
Cerebral palsy is a neurological condition, and due to this, there are some surgical interventions that can help to alleviate the more severe symptoms. Many of these surgeries involve modifying tissues and nerve connections and in the brain and spinal cord in order to relieve spasticity and improve coordination and control. Some neurosurgeries that may be beneficial for people with cerebral palsy include:
A selective dorsal rhizotomy (SDR) procedure is a surgery that carefully destroys malfunctioning nerves in the spinal cord. By selectively destroying these nerves, the neuromuscular effects of cerebral palsy, such as spasticity and muscle tone, are often improved. Most SDR surgeries cost between $20,000 and $40,000 depending on the severity of the cerebral palsy (1).
Intrathecal baclofen bumps are inserted surgically into the abdomen, above the layer of organs. This pump, roughly the size of a hockey puck, is connected to the spine via a catheter, and pumps out baclofen directly into the spinal fluid. Once administered, baclofen can help lessen spasticity, relax muscles, and improve muscle tone and mobility. It is estimated that the cost of baclofen surgery and maintenance is about $28,500 yearly, with the possibility of a lowered annual amount over time (2).
Seizures can often be treated by anticonvulsant or antiepileptic medications. If, however, these treatments to do not stop seizures, or result in extreme side effects, surgery may be beneficial. In surgeries meant to stop seizure activity, surgeons remove the abnormal brain tissue that is responsible for the seizures. This type of surgery can cost anywhere from $50,000 to $200,000 depending on the type and complexity of the tissues needing removal, and on the type of procedure that must be done.
Deep brain stimulation is a recent addition to the neurosurgical arsenal and has been shown to be effective for the treatment of dystonic (slow movements, muscle rigidity) cerebral palsy. During this procedure, an electrode is carefully placed near the part of the brain impacted by dystonia. Once the electrode is in place and functioning it can provide stimulation to parts of the brain impacted by dystonia, thereby decreasing the dystonic movements and postures. A traditional DBS surgery can cost anywhere between $30,000 and $50,000 (3).
Some individuals with cerebral palsy may suffer from a condition called hydrocephalus in which excessive cerebrospinal fluid accumulates in the ventricles of the brain. In order to drain the built up fluid and redirect it into the appropriate locations surgeons can place a hollow tube, called a shunt, into the brain. The average cost of shunt implantation is about $35,816 (4).
People with cerebral palsy often have difficulties chewing, sucking food through the mouth, swallowing, or digesting food. In order to alleviate these issues, physicians often recommend gastroenterologic surgery. This set of surgeries aims to improve feeding, digestion, and bladder function, in order to ensure that an individual receives a safe nutritional intake.
Nissen fundoplication is procedure used to treat gastrointestinal reflux disease (GERD). GERD is common in many children with cerebral palsy, and this surgery is often recommended to remedy the issue. During a Nissen fundoplication, surgeons reinforce the lower esophagus by wrapping the top of the stomach around it. The estimated cost of a Nissen fundoplication procedure averages around $25,500 (5).
Many children with CP may need an NG tube in order to promote and assist with feeding. During the insertion procedure, the plastic NG tube is placed through the nose, down the throat, and into the stomach. The insertion procedure costs about $28,800. Additionally, NG tubes come with associated costs related to tube care and specific feeding necessities.
Some children with cerebral palsy will need a G-tube. A G-tube is surgically placed through the abdomen into the stomach. Once placed, a G-tube can deliver nutrients directly into the stomach. Gastrostomy surgery can range anywhere from $15,000 to $45,000, depending on the complexity of the surgery and any resulting postoperative needs. (6).
Augmentation cystoplasty, also known as bladder augmentation, is a surgery intended to help provide individuals with urinary incontinence. Depending on severity, certain children with cerebral palsy may have trouble with bladder control, and this procedure can help. The costs associated with this procedure are extremely variable and depend on the complexity and length of both the surgery and the resultant hospital stay.
Individuals with cerebral palsy may also suffer from achalasia, which is a condition that makes swallowing extraordinarily difficult. This can detrimentally impact feeding. Achalasia can be managed through a surgery called a myotomy, in which muscles in the esophagus and stomach are laproscopically modified to improve swallowing. Laparoscopic myotomies average at about $45,000 (7).
This surgery is used to help treat the symptoms of gastrointestinal reflux disease (GERD). It is often suggested as a remedy if a Nissen fundoplication (listed above) is ineffective or impossible to perform, or if the child has severe neurological impairments. Because this surgery is rarer than others, it is difficult to narrow down an exact price range.
In some cases of cerebral palsy, individuals suffer from associated breathing and salivary issues. Oftentimes these conditions can cause children serious discomfort or may put their health and well-being in danger. Luckily, several surgeries exist that can help alleviate the symptoms of these problems, and improve the daily lives of children with cerebral palsy. In most cases, pulmonary surgeries for children with cerebral palsy are aimed at improving breathing, swallowing, and drooling. Some of the most beneficial pulmonary surgeries for children with cerebral palsy are:
Oftentimes, children with hypotonic cerebral palsy are impacted by airway obstruction. Luckily, airway obstruction removal surgery can help alleviate this problem. There are several different techniques used to remove an airway obstruction; therefore, it is difficult to narrow down a price. Sometimes these procedures are partially paid for through insurance.
Many children with severe motor and intellectual disabilities related to cerebral palsy suffer from intractable aspiration, a condition in which the individual inhales food, stomach acid, and saliva into the lungs. This surgery, which separates the upper respiratory tract and digestive tract, can help to prevent the symptoms of intractable aspiration. As with many surgeries, the costs associated with laryngotracheal separation are variable, and may be in part covered by insurance.
Many pediatric patients with cerebral palsy have symptoms of drooling, and this can be a difficult problem to manage. During a submandibular duct relocation surgery, the ducts responsible for controlling saliva flow are re-routed in order to help control drooling. The price of this surgery is largely dependent on the current extent of drooling and the complexity of the surgery.
Many children with cerebral palsy have hearing and visual impairments related to their condition. These can include vision loss, acuity loss, field loss, oculomotor problems, sensory processing difficulties, and hearing loss. Because hearing and vision can help connect us to the outside world, medical professionals find it imperative to do everything in their power to help protect and restore these functions in children with cerebral palsy. Common hearing and vision correction surgeries that may benefit children with cerebral palsy are:
Sensorineural hearing loss, a side effect of cerebral palsy and HIE, can be remedied with cochlear implants. Cochlear implants are electronic devices implanted in the ear; rather than amplifying sounds (as hearing aids do), they mimic the function of the inner ear. It is estimated that the total cost of cochlear implantation can be more than $40,000 (8).
Children with CP may sometimes suffer from conductive hearing loss, which can impair their ability to communicate with the world around them. Luckily, there is a surgery for conductive hearing loss, called a Stapedectomy, which lifts the ear drum and modifies the bone structure of the ear. This surgery averages at about $3,700 (9).
Some children with cerebral palsy have a condition called strabismus in which their eyes are not straight, this can prevent them from seeing with normal, binocular vision. Sometimes strabismus can be treated simply through the use of glasses, but other times surgery is needed. During surgery, the weak muscles of the eye will be strengthened, and the overly strong muscles of the eye will be loosened in order to restore binocular vision. Strabismus surgery typically costs just under $5000 (10).
Nearsightedness, farsightedness, and astigmatism are all risks for many children with cerebral palsy, a photorefractive keratectomy can help to remedy this. During a PRK procedure, a laser is used to remove a piece of the cornea, resulting in a reshaped cornea, optimal for the correction of vision problems. The average cost of a photorefractive keratectomy is $2080 per eye (11), as some people may only need correction on one side.
In order to correct issues of nearsightedness, farsightedness, and astigmatism associated with cerebral palsy, many children can receive LASIK surgery. During a LASIK procedure, the cornea is modified in order to correct these vision problems. The average price of LASIK surgery is around $2500 per eye (12), as some people may only need correction on one side.
Children with cerebral palsy are often affected by physical disabilities such as musculoskeletal issues, abnormal muscle tone, spasticity, and problems with balance and gait. There are a range of orthopedic surgeries that can be used to help improve these conditions. Generally, these orthopedic surgeries are aimed at improving fine and gross motor skills, ambulation, balance and coordination, spasticity, and pain. Some beneficial orthopedic surgeries for children with cerebral palsy include:
Some children with cerebral palsy, particularly those with spastic cerebral palsy, are at risk of hip dislocation due to the presence of extremely tight adductor muscles in the hip and inner thigh. It is these tight muscles that are responsible for the “scissor gait,” characteristic of many with CP. These tight muscles put individuals at risk for hip dislocation. During an adductor tenotomy, the muscles of the groin are cut and allowed to retract, lessening the risk of hip dislocation.
Many children with cerebral palsy endure constant or near constant tightening of tendons in many parts of the body. Tendon lengthening procedures can be used to help stretch out these tendons in order to make walking and sitting easier. The extent to which tendons should be lengthened depends on the individual, and because of this, the cost of tendon lengthening procedures varies greatly.
Oftentimes cerebral palsy can impact the flexibility and range of motion in the hands and fingers. Muscle lengthening surgery can help to relieve tightness or stiffness in the arm muscles in order strengthen fine motor skills. Muscle lengthening procedures vary in price depending on factors specific to each individual case.
Arthrodesis is a surgical procedure in which bones are connected through a fusion of their mutual joints. This procedure can be particularly beneficial to children with cerebral palsy who suffer from intractable pain in the wrist or feet or who endure extreme spasticity. Because this procedure can be performed on many parts of the body, and often differs in its complexity, narrowing down a price is a very difficult venture.
Some children with cerebral palsy suffer from neuromuscular scoliosis due to near-constant uneven pulling on the spine during episodes of spasticity. When scoliosis is severe, it can usually be treated with a spinal fusion procedure in which vertebrae in the spine are fused in order to make the spine more stable. While spine stabilization procedures depend largely on age, extent of spinal curving, and overall health of the individual, it averages in at about $100,000 (13).
Many children with cerebral palsy suffer from subluxation or dislocation of the hip, which can make walking and sitting very difficult. During a femoral osteotomy, the thighbone is typically cut just below the hip joint in order to redirect it back into place. An Osteotomy can cost about $4,200 depending on the complexity of the procedure (14)
The cost of cerebral palsy-related surgeries can vary drastically depending on the type of surgery, the complexity of the case, and many other important factors. It is also important to note that there are often surgery-associated costs that may substantially impact the financial total of a particular surgery. Some associated costs to keep in mind include lengthy hospital stays, potential complications, and regular follow-up with relevant medical specialists.
Medication needs vary significantly depending on an individual’s medical and lifestyle needs. Common medications used to ameliorate the side effects of cerebral palsy, infant brain injuries, and other disabilities include Botox, baclofen, seizure drugs, antidepressants, muscle relaxants, pain management drugs, and others.
While each child’s doctor may prescribe different drugs depending on the child’s unique set of health concerns, there are two medications that are very common, and that parents should know about: Botox and baclofen. Both of these drugs are useful in helping control spasticity, but are used in different circumstances for different sets of problems. There are, of course, numerous other drugs used to treat the conditions associated with cerebral palsy, though they do not all work to treat the same kinds of conditions. The following is a brief overview of just some of the drugs used to treat cerebral palsy.
These are drugs that block the neurotransmitter acetylcholine, which inhibits the parasympathetic nerve responses that are responsible for involuntary muscle movements and excessive drooling. The following types of anticholinergic medications may benefit people with cerebral palsy:
Anticonvulsants are drugs that reduce excessive brain stimulation and inhibit seizure activity. There are a variety of different types, and they prevent seizures through many different mechanisms. Some examples of anticonvulsants are as follows:
1) Benztropine (Cogentin)
2) Carbidopa-levodopa (Sinemet)
3) Glycopyrrolate (Cuvposa, Robinul)
4) Trihexyphenidyl (Artane)
5) Gabapentin (Neurontin)
6) Lamotrigine (Lamictal)
7) Oxcarbazepine (Trileptal)
8) Topiramate (Topamax)
9) Zonisamide (Zonegran)
10) Phenytoin (Dilantin)
11) Depakene/ Valproic acid (Valproate / Valrelease)
12) Divalproex Sodium (Epival)
13) Carbamazepine (Tegretol)
14) Clonazepam (Klonopin / Rivotril)
15) Ethosuximide (Zarontin)
Many people with chronic illnesses such as cerebral palsy develop depression at some point in their lives. Commonly prescribed antidepressants include:
These drugs can be used to treat spasticity, which is a common symptom of cerebral palsy. Muscle relaxants increase range of motion and inhibit muscle contractions. Examples include:
1) Diazepam (Valium)
2) Dantrolene (Dantrium)
4) Cyclobenzaprine (Flexeril)
5) Botox (injections)
6) Baclofen prescriptions
Anti-inflammatory drugs can decrease pain, and make people with cerebral palsy more comfortable. Here are just a few types:
Many people with cerebral palsy struggle with constipation, and may need laxatives or stool softeners to eliminate waste from their digestive tracts.
The costs of medications for CP vary widely depending on the child’s insurance coverage, prescribed dosage, and recommended brand. Many parents find cost comparison websites like http://health.costhelper.com/ and https://www.goodrx.com/ helpful.
There are a variety of other ways in which raising a child with cerebral palsy may impact the family budget. Some of these are direct expenses that did not clearly fit into any of the categories we have outlined; others are indirect financial losses. These important considerations include:
If their child requires extensive, round-the-clock care, and parents choose not to hire full-time help, they will likely experience a loss of wages. In some cases, one parent can work while the other cares for the child. Alternatively, they may both work part-time, or decide on some combination of part-time work and hired help. These scenarios will result in one or both parents giving up at least a portion of their salary. For some, this may also lead to decreased insurance coverage. It is also important to note that if a child has a severe disability, he or she may also be unable to work, which means a loss of wages in adulthood and continued financial dependency on parents.
Parents of children with severe disabilities often find themselves feeling overwhelmed. In order to get by, they might seek psychological counseling. The stress of parenting a child with disabilities also leads to marital conflict and high rates of divorce (Hartley et al. 2010). To avoid this, parents may choose to regularly attend couples’ therapy. Some parents may also need to take anti-depressants or anti-anxiety medications. Finally, even parents who choose not to hire regular caretakers will occasionally need respite care. If their child has extensive health requirements, they will need to find someone more experienced (and probably more expensive) than a typical sitter.
Many children with developmental disabilities have sensory-processing issues, and cannot tolerate certain types of fabric. Sensory-friendly clothing is not especially expensive (check out retailers like Target, Zappos, and Tommy Hilfiger for current offerings). However, sensory issues may make it difficult for children to accept hand-me-downs from older siblings, which could mean purchasing an entirely new wardrobe. Children may also need sensory-friendly toys and specialized recreational environments.
Some children with cerebral palsy will need personal care items beyond those required by a child without disabilities. Incontinence supplies, such as diapers, wipes, underpads, and gloves, can cost over $3,000 annually. Formula for those with G-tubes can cost over $2,500 annually. Other disposable items, such as syringes, tubes, and bags, add onto the cost.
Depending on how cerebral palsy affects them, some children might benefit from having a service dog. There are many different kinds: guide dogs for the blind, hearing alert dogs, mobility support dogs, psychiatric service dogs, seizure dogs, and more. If obtained from a non-profit organization, service dogs may be very affordable or even free. However, some people chose to go through for-profit businesses because they have shorter wait times and may be more willing to give a dog to a young child. In these cases, service dogs can cost upwards of $24,000. Regardless, parents will be responsible for the costs of feeding and caring for the dog.
Other children may need Emotional Support Animals; these are not considered service animals, but they fall under the category of “assistive aids.” ESAs can be birds, dogs, cats, minipigs, rodents, and more.
Adaptive recreational opportunities and equipment span a wide range of purposes and costs, and they help individuals with disabilities overcome limitations that would otherwise make full participation very difficult. Devices that fall into this category include prosthetics, orthotics, and adaptive wheelchairs, among the most well-known technologies. Adaptive physical education specialists are sometimes consulted when making decisions regarding which adaptive equipment is best for a certain set of disabilities, although occupational therapists are often easier to find and have similar training and/or education. Types of adaptive recreation include:
Although many forms of adaptive technology are widely available and at least partially covered by insurance, there are particularly new, modern devices that may be harder to obtain. These include things like supportive exoskeletons, motorized personal braces, rehabilitative systems, implanted device control systems, and more. While such systems are still highly experimental and often extremely expensive, as these technologies mature, they will hopefully become more attainable by the populations that require them most.
This includes prosthetics, orthotics, adaptive wheelchairs, and other technologies designed to be used in recreational pursuits (sports, art, etc.). To read about general adaptive equipment, visit the “Equipment and Technology” section.
Individuals with disabilities can participate in specific leagues, teams, and lessons for adaptive skiing, snowboarding, cycling, baseball, softball, goalball, boccia ball, volleyball, rugby, curling, ice skating, fencing, sled hockey, horseback riding, fishing, golf, hunting, swimming, surfing, track and field, bowling, rock climbing, and more.
Therapeutic recreation programs exist for those with disabilities. Examples include aquatic therapy, play therapy, music therapy, art therapy, dance therapy, and more. In some cases, these programs may be more expensive than non-adaptive recreation opportunities. However, there are also many recreational programs for people with disabilities that are run by non-profit organizations. This may help to defray some of the cost – certain programs are even free.
Children with cerebral palsy and other disabilities may choose to attend a summer camp that caters specifically to children with disabilities. These programs offer additional medical support and/or supervision to participants. They allow children to develop independence away from their families, make friends, and participate in a variety of engaging activities.
The costs covered in this piece can be overwhelming. Fortunately, parents can find help paying for their child’s care in a number of places. While financial assistance plans will look very different from family to family, there are a few common threads. People with disabilities are eligible for government assistance, tax breaks, insurance programs, financial assistance measures, special savings accounts, trusts, waivers, and more. Children whose diagnoses stem from medical errors may be eligible for compensation from medical malpractice lawsuits. Below are a few resources to see if you can defray the costs covered in this piece and get you started on your child’s financial plans:
We hope this cost guide is a helpful resource for families of children with cerebral palsy and other disabilities. The information in this guide is intended to help families become acquainted with the resources and equipment their child may need throughout their life - not to provide an exact budget. Factors such as individual medical needs, location, and personal preferences may cause these expenses to vary widely.
For extensive information on disability resources, diagnoses, and more, visit the HIE Help Center, a site designed to support and inform the families and loved ones of children with disabilities including cerebral palsy, hypoxic-ischemic encephalopathy (HIE), and more.