Insurance & Benefits Guide for chILD Families

A Guide for Families of Children with chILD

When your child has chILD, navigating insurance and workplace benefits can feel like a second job. This guide covers health insurance basics, your rights at work, and financial support programs that can help your family.

Part 1: Understanding Health Insurance

Key Insurance Terms

Term	What It Means
Premium	The monthly amount you pay to keep insurance active — even if your child has no doctor visits that month
Deductible	The amount you pay out of pocket before insurance starts sharing costs
Co-pay	A fixed dollar amount you pay per visit or service
Coinsurance	The percentage of costs you share after meeting your deductible
Out-of-pocket maximum	The most you will ever pay for covered services in one year — after this, insurance pays 100%
In-network	Doctors and hospitals with a contract with your insurance — they cost less
Prior authorization	Approval required from insurance before certain treatments or medications

Marketplace Plan Levels

Plan Level	How Costs Are Split
Bronze	Lowest monthly premium; you pay about 40% of costs
Silver	Medium premium; you pay about 30%
Gold	Higher premium; you pay about 20%
Platinum	Highest premium; you pay about 10%

Important for chILD families: Children with chILD often need frequent care and specialist visits. A Gold or Platinum plan may save money overall, even with a higher monthly premium.

Public Insurance Programs

• Medicaid — Covers families with low incomes and children with disabilities. Children with serious conditions like chILD may qualify even if family income is above the usual limit.
• CHIP (Children’s Health Insurance Program) — For families who earn too much for Medicaid but can’t afford private insurance. Visit InsureKidsNow.gov or call 1-877-KIDS-NOW.
• Medicaid Waivers (Katie Beckett / TEFRA) — Allow children with significant disabilities to get Medicaid based on the child’s income alone, not the parents’. Apply early — programs often have waitlists.

When Insurance Says No: The Appeals Process

Many families win appeals with strong medical evidence. Steps:

1. Get a letter of medical necessity — Ask your child’s chILD doctor to write a detailed letter explaining why the treatment is needed
2. File an internal appeal — Usually within 180 days of the denial; include the doctor’s letter, medical records, and supporting research
3. Request an external review — An independent medical expert reviews your case if the internal appeal fails

Part 2: Workplace Rights for Working Parents

FMLA: Family and Medical Leave Act

FMLA gives eligible employees up to 12 weeks of unpaid, job-protected leave per year to care for your child. Your employer must hold your job for you.

Who qualifies: You work for a company with 50+ employees, have worked there 12+ months, and worked at least 1,250 hours in the past year.

Types of FMLA leave:

• Continuous leave — Several weeks off in a row (for example, during a hospital stay)
• Intermittent leave — Time off in separate blocks (for example, one day a week for clinic visits) — especially helpful for chILD families
• Reduced schedule — Fewer hours each day or week

ADA: Americans with Disabilities Act

The ADA protects employees from discrimination and requires employers to provide reasonable accommodations. For chILD families, examples include flexible scheduling, remote work, modified breaks for treatments, or a part-time schedule.

The ADA also protects you from discrimination based on your association with a person with a disability — your employer cannot treat you differently because of your child’s condition.

Part 3: Government Financial Support Programs

SSI: Supplemental Security Income

SSI provides monthly payments to children with disabilities whose families have limited income and resources. Children with chILD may qualify based on how the disease limits breathing and physical activities.

To apply: Visit ssa.gov/applyfordisability or call 1-800-772-1213. The process can take 3–6 months. Many applications are denied the first time — you have the right to appeal.

SSDI: Social Security Disability Insurance

Children may qualify for SSDI benefits when a parent receives SSDI or Social Security retirement. After 24 months on SSDI, your child may become eligible for Medicare.

Questions to Ask Your Child’s Medical Team

• Would our child qualify for SSI, Medicaid, or a Medicaid waiver?
• What state programs are available for our child’s level of need?
• Which of our child’s treatments require prior authorization?
• Can you write a letter of medical necessity to support our authorization request?
• Can you connect us with a social worker or care coordinator?

Glossary

ADA (Americans with Disabilities Act) — A federal law prohibiting employment discrimination against people with disabilities and requiring reasonable accommodations.

COBRA — A federal law letting you keep employer health insurance for up to 18 months after losing your job, if you pay the full premium.

FMLA (Family and Medical Leave Act) — Gives eligible employees up to 12 weeks of unpaid, job-protected leave per year to care for a family member.

Letter of Medical Necessity — A letter from your child’s doctor explaining why a treatment, medication, or equipment is medically necessary. One of the most important tools for winning insurance appeals.

Prior Authorization — Advance approval required from your insurance before certain treatments or medications will be covered.

Reasonable Accommodation — A change to work schedule or duties that allows an employee to do their job while managing caregiving responsibilities.

Respite Care — Temporary relief care for family caregivers, sometimes funded through Medicaid waivers.

SSI (Supplemental Security Income) — A federal program providing monthly income to children with disabilities whose families have limited financial resources.

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This information is for educational purposes only. It should not be used as a substitute for the medical advice of your child’s healthcare provider.