How to Navigate the system when you have a child with cancer is one of the most challenging events parents may face. There are essential key aspects to always have in mind like medical, insurance, psychological, and legal matters.
In general, we can point out that every family in this situation must procure:
- Remain in contact with professionals in the field of Childhood Cancer.
- Reading and understanding the Individuals with Disabilities Education Act (IDEA) that was later extended and modified by the Individuals with Disabilities Education Improvement Acts of 2004, 2008, and 2011.
- Check if the children might need accommodation and assistance: Section 504 of The Federal Rehabilitation Act.
- Access to advocacy programs that assist parents with financial concerns.
- Parents need to remember that special education services are also available if the medical condition of children limits their vigor, readiness, or strength.
- Information about school programs that offer virtual education for patients. It is also very important that the teacher visit the patient from time to time to ensure humane contact and proximity.
- Emotional support and group therapy for families to help them sustain tests, interventions, and treatments.
- Education of the parents and child patient with resources they can access and understand.
- Medical diagnosis and the possibility of taking part in clinical trials.
Access to educational services in school
All starts with a referral to the school about the condition of the patient. Once that first part is completed parents need to engage in the evaluation, eligibility, and an individualized education program (IEP) of the minor, as well as participate in an annual and triennial review to continue with the service the school provides.
Once the referral is completed, the evaluation starts with the parents giving the proper permissions so the school can review the situation and, if positive, agree that the child requires more assistance, and in which way this will be satisfied. At this moment, if the answer is negative, parents can also ask for an independent evaluation but in that case the cost must be covered by the parents.
When the evaluation is completed, a meeting ensues. Following testimonies of parents who have been in the same position, it is highly recommendable to bring a doctor and an advocate to the meeting. The parents must also guarantee that they will attend all meetings concerning their child educational needs.
The next step is accessing the IEP program. At this stage, the parents and teachers must agree on what, how, and when the child will receive school lessons. In essence, the IEP allows children to access homeschooling, physical therapy, counseling, special teachers, among other services. The IEP also includes annual goals, benchmarks, ways to evaluate progress, and accommodations. It also shows the testing and graduation requirements process.
There are also legal remedies for parents who need to keep their benefits if they lose their jobs and are required to extend the insurance for their children
Medicaid, Medicare, and other insurance alternatives
Medicaid is an insurance program that includes the participation of the federal and state government. All states have an agency that administers this social aid.
You can use Medicaid to pay prescriptions, physical and occupational therapy, and doctor bills, among other medical expenditures.
Medicaid focuses on children in low-income families and disabled adults who cannot work. However, many can access Medicaid if they are not low-income, reducing the total amount to pay to a minimum. For more information, visit your Medicaid office
For Medicare, a federal program, by following the Title II and Title XVI of the Social Security Act (SSDI), and by fulfilling the proper requirements, children can access to payments to cover hospital bills, medical expenses and medical equipment, with some of these expenses being deducted from the social security check they receive. Click here to know more.
Keep in mind that accessing the services mentioned in both Titles II and Title XVI contemplate different requirements.
Many states also provide insurance alternatives to high-risk child patients known as Child Health Insurance Plans (CHIP) ask for more information to your local Insurance Administration.
Keep in mind that accessing the services mentioned in both Titles II and Title XVI contemplate different requirements.
Legal remedies
There are also legal remedies for parents who need to keep their benefits if they lose their jobs and are required to extend the insurance for their children:
Options like COBRA (Comprehensive Omnibus Budget Reconciliation Act) provides continuation of insurance for 18 months if the employee is fired.
ERISA (Employee Retirement and Income Security Act) Guarantee that private employees can collect benefits from health plans and much more while prohibiting employers from acting against them, like laying them off or trying to reduce their hours.
On the other side, HIPPA (Health Insurance Portability and Accountability Act of 1996) guarantees coverage if the parents of a child with cancer need to change jobs, if they have been insured for one year.
It also prevents patients with cancer from suffering from discrimination based on medical information, making it more accessible to them to access insurance.
After reviewing these options remember to get in contact with a social worker who can assist you in better ways and details on how to assist your child. Together we can make more families find the necessary resources to protect their children’s recovery.
