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.
Insurance Information (PDF)- an informative page written by a CHASA volunteer
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.
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. Sometimes it’s difficult to even find the page that explains how to apply for this program. Try searching for: Medicaid Waiver and the name of your state.
Every parent of a child with special needs should read this fact sheet www.InsureKidsNow.gov
These following services vary from state to state:
- 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.
Planning for the Future for Children with Disabilties
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.”
In December 2014, the President of the United States signed the Tax Extenders package, making the ABLE Act an official law. Each state is responsible for establishing and operating an ABLE program and states should begin to accept applications to establish ABLE accounts before the end of 2015.
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
Children’s Hemiplegia and Stroke Association Orthotic Grant Program
UnitedHealthcare Children’s Foundation – medical grants
Partnership for Prescription Assistance
UCP Bellows Fund – funds for assistive technology equipment
Children’s Hemiplegia and Stroke Association College and Vocational School Scholarship Program
College Scholarships and Financial Aid
Partnership for Prescription Assistance
Directory of State Insurance Departments
Financial Cost of Pediatric Stroke
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?