© Nutdanai Apikhomboonwaroot
It can be overwhelming to hear your child has a medical or behavioral diagnosis which puts them into a “special needs” category. In amongst all those emotions and questions will be a concern about how to finance your child’s healthcare, therapies, or opportunities for integration with other children.
In the USA, there are several programs which aim to assist families whose children require care above and beyond that expected for other children. For example, if your newborn arrives weeks, or even months, early, or whose birth weight is too low for their gestational age, a federal program called Supplemental Security Income (SSI) can assist your family by providing a small stipend for your child while they require intensive care. It is assessed based on your family’s income and can take several months to process, but some conditions qualify for immediate payment. These include:
- HIV infection
- Total blindness
- Total deafness
- Cerebral palsy
- Down syndrome
- Muscular dystrophy
- Severe intellectual disorder
- Birth weight below 2lb, 10oz
Obviously, those children who require NICU care but are developmentally and medically healthy upon discharge will no longer qualify for SSI payments after their first birthday. Children whose conditions are long-term or life-long may qualify for SSI their entire lives. An assessment is carried out every three years to see if your child still requires SSI benefits. Visit the Social Security Administration’s website for more information.
Each state runs their own assistance programs, but all states must operate a version of Title XIX. This is a Social Security mandate which provides grants to states for medical assistance programs. For children, this usually boils down to the following: children whose medical expenses are above and beyond that expected for most children may qualify for assistance with their healthcare costs under a specific element of Medicaid. This varies from state-to-state, but families could qualify in one of two ways:
If a family’s income is too high to qualify for complete medical coverage, the state may require them to purchase their own private insurance. All out-of-pocket expenses, such as deductibles and co-payments, may then be covered by the state. This applies only to the child concerned (and not the entire family), who effectively ends up with primary and secondary insurance policies.
If a family’s income is low enough, the state may cover all of the child’s medical costs.
Title XIX benefits for children with disabilities may have different names in each state – in Wisconsin it is known as the Katie Beckett program, for example — so it’s worth researching your own state and how it coordinates Title XIX benefits.
Many states also operate an assistance program for travel needs. This may involve arranging transportation to and from medical appointments by a designated company (whose expenses are covered by the state), or a refund program for gas and mileage so parents can transport children by themselves. Disability.gov has a wealth of information on funding for transportation under the “Transportation” tab.
Additional funding opportunities can cover a range of services, from high-need medical to high value respite and therapy. Each state will co-ordinate this separately, but there will usually be at least some provision for families to receive funding for specialist equipment, services, respite care, therapies not covered by the state’s Birth to 3 program or school system, or experimental medical treatment (such as hyperbaric oxygen therapy).
It can take a while to learn about all the funding opportunities available to your child, so try not to feel too overwhelmed when you first hear about your child’s diagnosis. You are the best advocate for your child, so take the time to learn as much as you can about their condition before you apply for anything. Government assistance programs are accompanied by reams of paperwork, and they will ask detailed questions about your child’s condition, needs, and care. It is therefore helpful to keep copies of any and all reports you are given, and to photocopy all the forms and paperwork you send off with your funding applications.
The clinics or physicians you work with will be able to point you in the right direction to start learning about any funding opportunities specific to your child. Take advantage of this resource as they will have assisted other families going through the same process, and will be able to offer help and advice if you require it. Be patient, be organized, and be prepared to fight for your child’s rights if necessary. Good luck!
