Paying for care

Medicaid, and why it matters even with private insurance

Private insurance covers medical care with limits: visit caps on therapy, exclusions, high deductibles, and equipment decisions made by a reviewer.

Medicaid often covers what private insurance does not. For children the requirement is broader than for adults. The early and periodic screening, diagnostic and treatment benefit requires coverage of medically necessary services for children. ⁴

Many families have both. Private insurance pays first. Medicaid picks up the rest, including copays and deductibles. That combination is often the biggest financial change a family makes.

Getting Medicaid when income is too high

Three routes.

A home and community based services waiver. Many waiver programs count only the child's own income and resources, not the family's. ^{1 2}

TEFRA or Katie Beckett. A state option. It lets a child with significant needs get Medicaid at home without counting parent income. Not every state has it. ³

SSI eligibility, which in most states brings Medicaid with it. ⁷

Apply for the waiver now. Waiting lists in some states run for years. Your place is usually set by the date you applied. ¹

What waivers cover

It varies by state and by waiver, and each has its own name. Typically they can cover: ²

• Personal care and attendant services.
• Respite care.
• Home modifications.
• Vehicle modifications.
• Specialized equipment.
• Therapies beyond what insurance covers.
• Case management.
• Family training.

How to apply

Contact your state Medicaid agency or your state's developmental disabilities agency. The financial help finder points you to the right office.

Ask three questions.

1. Which waivers might my child be eligible for?
2. Is there a waiting list, and how long?
3. Can I be added to the list today while we work out eligibility?

That third question is the one that matters most.

SSI

Supplemental Security Income is a monthly federal payment for children with a qualifying disability whose household income and resources are within limits. ⁵

The amount is set federally. It changes each year with a cost-of-living adjustment. The Social Security Administration publishes the current figure. This site does not restate it, because it changes every year. ⁸

The two tests. The child must meet the disability definition. The household must also meet income and resource limits. Many families are turned down on income while a child is young, and qualify later.

In most states, SSI brings Medicaid with it. ⁷

At 18, the rules change. The income test switches to the young adult's own income. Many young people who were denied as children qualify at 18. Diary this.

Apply even if you expect to be denied. Denials are common. Appeals often succeed. Keep the medical evidence organized, because that is what decides it.

ABLE accounts

An ABLE account is a tax-advantaged savings account for a person whose disability began before a set age. ^{6 9}

Here is the point. Money in an ABLE account does not count against the resource limits that apply to SSI and Medicaid, up to set thresholds. Without one, saving more than a small amount in a child's name can cost them benefits.

Contribution limits and balance thresholds are set by federal rules. They change over time. The ABLE National Resource Center and the IRS publish the current figures. This site does not restate them, because they change. ^{6 9}

Who can contribute. Anyone. Grandparents, friends, and the person themselves.

What it can be spent on. Qualified disability expenses. That is a broad category. It includes education, housing, transport, health and assistive technology. ⁹

Where to open one. Most states run a program. Many accept residents of other states. Compare fees and investment options. ⁶

An ABLE account is one of the simplest useful things a family can set up. Many families do not know it exists.

Special needs trusts

A special needs trust holds money for a person with a disability without that money counting against benefit limits. ¹⁰

You need one if the child will receive a significant sum: a settlement, an inheritance, or a gift.

Never leave money directly to a child with a disability in a will. It can disqualify them from benefits. Family should leave it to the trust instead. Tell grandparents early.

Types. A first-party trust holds the person's own money, such as a settlement. It is subject to Medicaid payback rules. A third-party trust holds someone else's money, such as an inheritance. It generally is not. A pooled trust is run by a non-profit. It pools funds for investment and keeps separate accounts. ¹⁰

Get a lawyer who does this specifically. Trust drafting is technical. An error is expensive to fix.

See settlements for how this works when a legal case resolves.

State and other programs

Your state's program for children with special health care needs, funded through the federal Title V block grant. Every state has one. It can cover care coordination, specialty care and sometimes direct services. ¹¹

Family-to-Family Health Information Centers. Free help from families who have done this, in every state. ¹²

Parent Training and Information Centers, for education rights. ¹³

The Arc, with local chapters providing advocacy and services. ¹⁴

Respite care. The ARCH National Respite Locator lists services by state. ¹⁵

Condition-specific organizations, which often have small grants for equipment.

Hospital financial assistance. Non-profit hospitals must have financial assistance policies. Ask for the policy by name.

Local charities and service clubs. They fund specific items, such as an adapted bike.

What to do this month

1. Apply for your state's Medicaid waiver. Ask to be added to the waiting list today. ¹
2. Apply for SSI, even if you expect to be denied. ⁵
3. Ask whether your state has TEFRA or Katie Beckett. ³
4. Open an ABLE account. ⁶
5. Contact your state Title V program for children with special health care needs. ¹¹
6. Contact your Family-to-Family Health Information Center. ¹²
7. Tell family members not to leave money directly to your child, and explain about the trust.

The financial help finder lists the contacts for your state. It runs in your browser and sends nothing anywhere.