Families of children with hemiplegia often experience financial challenges. Some of these challenges include: no or inadequate insurance coverage, insurance coverage with high co-pays and deductibles, not qualifying for government assistance because they make just a little too much money, limited number of therapy visits, loss of income due to therapy and doctor visits, and loss of income when one parent stays home to care for their child. The information provided below will help you explore insurance and government benefit options. Your child may also benefit from a special needs trust which may allow your child to qualify for special benefits and programs while still maintaining a good quality of life.
Private Insurance
Insurance Information (PDF)- an informative page written by a CHASA volunteer
Special Hospitals
Shriners Hospital for Children – Various locations across US. Provides orthopedic services, often at no cost.
Texas Scottish Rite Hospital – Texas Scottish Rite Hospital for Children provides care for orthopedic patients who may have related neurological disorders and neuromuscular diseases. Because a physical orthopedic condition can be related to another condition or underlying disorder, TSRHC offers other medical services to its orthopedic patients. Visits, procedures, surgeries, orthotics, and other medical needs often provided at no cost and not usually based on income.
Government Programs
CHASA Medicaid Waiver Fact Sheet
Medicaid Waiver Program – Keep clicking through to specific programs on this site and you will eventually find a phone number/website where you can find out how to apply.
Medicaid Waiver Program – federal information on the Medicaid waiver program. This program is NOT based on parent income. It is based on the child’s income and many children with hemiplegic cerebral palsy will qualify. These programs may pay for special therapies, medical co-pays and medication, transportation to medical visits, attendant care, respite, home adaptations, and a variety of services your child with hemiplegia may need. Some states have very long waiting lists, so even if you do not believe your child currently needs services, we recommend that you add their name to the waiting list and evaluate your child’s situation when they become eligible for the program.
Every parent of a child with special needs should read this fact sheet www.InsureKidsNow.gov
These following services vary from state to state:
- Medicaid
- Social Security Benefits for Children with Disability – a government pamphlet
- Medicaid Home and Community Services Primer- a comprehensive explanation with specific chapters on children’s participation in the program.
Special Needs Trust
A major concern for families of children with hemiplegia is how to best fund the child’s long-term personal and financial needs in a manner that will provide them with a fulfilling lifestyle. Some families choose to set up a “Special Needs Trust.” (CHASA does not endorse any of the financial service providers listed below.)
Special Needs AllianceFinancial Planning: Special Needs TrustMerrill Lynch Special Needs Financial ServicesMetLife Special Needs Planning
Other Resources for Families of Children with Hemiplegia
2-1-1 Information and Referral Call Centers - call for help with food, housing, employment, health care, counseling, and more
UnitedHealthcare Children’s Foundation – medical grants
Variety the Children’s Charity – assistance to children with mobility concerns
Disabled Children’s Relief FundPartnership for Prescription AssistanceUCP Bellows Fund – funds for assistive technology equipment
College Scholarships and Financial AidDirectory of State Insurance Departments Finding Insurance OptionsThe Special Needs Trust : an informative article on KidSource.com (last updated 2000, so information may be dated)
The 5-Year Direct Medical Cost of Neonatal and Childhood Stroke in a Population-Based Cohort
The Cost of Pediatric Stroke Acute Care in the United States
Cost of Raising a Child with Special Needs: Where Does Your State Rank?
