Cerebral Palsy Resources

Happy Disabled ChildFamilies 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.

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.

http://ucp.org/resources/resource-guide/

http://ucpwcw.org/wp-content/uploads/2015/06/2015-2016-Bellows-Fund-Application.pdf

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.

http://www.abilityfound.org/about/how-we-work/

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.

http://www.daniellesfoundation.org/

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.

http://usvariety.org/freedom/

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.

http://chasa.org/we-can-help/orthotic-grants/

http://chasa.org/

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.

http://themorganproject.org/

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.

http://www.uhccf.org/

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…

https://www.ssa.gov/disabilityssi/

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…

https://www.ssa.gov/ssi/

https://www.ssa.gov/ssi/text-apply-ussi.htm

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…

https://www.medicaid.gov/CHIP/CHIP-Program-Information.html

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.

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