Raising a child with hypoxic-ischemic encephalopathy (HIE) or an associated disability such as cerebral palsy (CP) can be costly. Throughout their lives, these children may require expensive treatments, therapies, and surgeries; adaptive technology and medical equipment; home and vehicle modifications; and constant care. In order to look after them, parents often end up taking extensive time off work, or one parent may stop working to become a full-time caretaker.
Unfortunately, many parents of children with chronic health conditions and disabilities find themselves struggling to provide for their families. On this page, we list a few government programs that may provide financial assistance. Some programs (such as Temporary Assistance for Needy Families, or TANF) are strictly temporary in nature, while others were developed to address long-term needs.
It is useful to note that individuals who qualify for one program often qualify for other programs, too.
Temporary Assistance for Needy Families (TANF)
The Temporary Assistance for Needy Families (TANF) program gives short-term support to low-income people who are either pregnant or raising a child/children (under 19 years of age). In addition to financial support, TANF recipients may receive help with childcare and job preparation.
TANF applicants can be underemployed, unemployed, or soon to be unemployed (1). Because it is administered separately by each state, the exact eligibility criteria and benefits provided to families under the program can vary.
To determine whether you may be eligible for TANF, please click here.
Having children with disabilities does not necessarily qualify a family to be eligible for TANF benefits, but the health status (including disabilities) of family members is considered as part of the application process.
Supplemental Security Income for children with health conditions and disabilities
Supplemental Security Income (SSI) is typically given to adults who are low income and either disabled or over the age of 64. However, it can also be provided to children if they have a serious medical condition or disability (there are still income maximums, which apply both to the child and their family).
Conditions that may qualify a child for SSI include, but are not limited to, the following (2):
- Cerebral palsy
- Down syndrome
- Severe intellectual disability
- Muscular dystrophy
- Symptomatic HIV
- Infants with a low birth weight or babies/toddlers who are failing to thrive
In order to apply for Social Security benefits on behalf of a child, a parent/guardian must complete an application for Supplemental Security Income (SSI) as well as a Child Disability Report. For more information on how to apply, please click here. You can also call the Social Security Administration at 1-800-772-1213, or visit your local Social Security office.
When a child turns 18, they must be reevaluated for SSI. For adult applicants, parental income is not a factor; only the individual’s income and their spouse’s income can be considered. Because of this, some people who were ineligible as children (because their family’s income exceeds the limit) become eligible after they turn 18 (2).
Social Security Disability Insurance (SSDI)
People who become disabled prior to the age of 22 can receive Social Security Disability Insurance (SSDI) if one of their parents is a) currently receiving Social Security benefits or b) deceased, but worked enough to qualify for Social Security. These SSDI “child” benefits can continue to be provided throughout adulthood as long as they meet income restrictions (marriage may also impact eligibility).
Parents can apply for SSDI on behalf of their disabled child by calling the Social Security Administration (1-800-772-1213) or visiting their local Social Security office. You will need the following:
- Your Social Security number, or the number of the parent on whose record the claim is being filed (this may be a deceased person)
- The child/adult child’s Social Security number and birth certificate
It will also help to be prepared with the child’s medical records/relevant information about their condition(s), but Social Security can also contact doctors directly to request the necessary reports (2).
If a young person with a disability wishes to seek employment, there are a variety of programs that can help them do so without losing their benefits. Under SSI, most of a child’s income may be excluded from eligibility calculations. If they are a student under the age of 22, even more of their earnings may be excluded. Having a Plan to Achieve Self-Support (PASS) can also help children over the age of 14 save money for education without losing social security benefits. Money paid for resources such as mobility equipment or a personal assistant can also be discounted (2).
Medicaid and Medicare
In most states, children are likely to qualify for Medicaid if they receive SSI (it may even be provided automatically). However, children may also be eligible for Medicaid even if they don’t receive SSI. To discuss eligibility, parents can contact their state Medicaid agency, local Social Security office, or local social services office.
Medicare is typically only given to people who have been receiving Social Security benefits for at least two years, or who are over the age of 65. Exceptions may be made for those with End-Stage Renal Disease or Amyotrophic Lateral Sclerosis (ALS/Lou Gehrig’s disease) (2).
Children’s Health Insurance Program (CHIP)
The Children’s Health Insurance Program, or CHIP, provides health insurance to children whose families are unable to afford private insurance, but exceed income maximums to qualify for Medicaid. To see maximum income levels for CHIP, please click here.
Each state has its own program under CHIP; these are closely affiliated with state Medicaid programs. Although benefits differ by state, all provide health care coverage for routine check-ups, immunizations, prescriptions, and more.
For more detailed information on government benefits available for children with disabilities, click here.
Help with basic living expenses
In addition to government programs geared towards supporting children with disabilities, there are a variety of programs that can help families who are struggling to pay for necessities such as food, housing, and medical insurance. For more information on sources of assistance with basic living expenses, please click here.
Settlements from birth injury lawsuits
Unfortunately, government programs for children with disabilities often do not cover nearly all of their needs. Nonprofits may be able to help, but are also limited in how much they can do.
Families of children with HIE may have another option for affording all of the resources their child needs: pursuing a birth injury lawsuit. HIE and associated disabilities often stem from a preventable birth injury – that is, medical malpractice during or near the time of birth.
If parents suspect that their child’s HIE was caused by the negligent actions of a medical professional or organization, they may want to contact a birth injury attorney. If a case is successful, the settlement or verdict can go a long way in securing the child’s future needs.
About the HIE Help Center
The HIE Help Center is run by ABC Law Centers, a medical malpractice firm exclusively handling cases involving HIE and other birth injuries. Our lawyers have over 100 years of combined experience with this type of law, and have been advocating for children with HIE and related disabilities since the firm’s inception in 1997.
We are passionate about helping families obtain the compensation necessary to cover their extensive medical bills, loss of wages (if one or both parents have to miss work in order to care for their child), assistive technology, and other necessities.
If you suspect your child’s HIE may have been caused by medical negligence, please contact us today to learn more about pursuing a case. We provide free legal consultations, during which we will inform you of your legal options and answer any questions you have. Moreover, you would pay nothing throughout the entire legal process unless we obtain a favorable settlement.
You are also welcome to reach out to us with inquiries that are not related to malpractice. We cannot provide individualized medical advice, but we’re happy to track down informational resources for you.