Planning for a Child with a Disability: School, Benefits and the Future

Your child on one page

A one-page profile is the most useful thing you can make. It goes in the backpack, the diaper bag, and the babysitter's hands.

Keep a separate list of the care team: doctors, therapists, the case manager or service coordinator, and respite providers, with the next appointment for each.

The school plan

	IEP	504 plan
Law	Individuals with Disabilities Education Act	Section 504 of the Rehabilitation Act
What it provides	Specialized instruction and related services, such as speech or occupational therapy	Accommodations so the child can access regular education, such as extra time
Written plan	Yes, with measurable goals	Usually, but requirements are lighter
Review	At least once a year, with a reevaluation at least every three years	Periodically, set by the school

You can ask the school for an evaluation at any time. Put the request in writing and keep a copy, since the request starts the school's timeline.

Keep the current plan, the last evaluation, and progress reports together, and write down the next review date.

Benefits and money

SSI

Supplemental Security Income can pay a monthly benefit to a child with a disability. For a child, Social Security counts the parents' income and resources, which is why many families are turned down. At 18 the child is reviewed again under adult rules, and parental income no longer counts. Many who were turned down as children qualify then.

Medicaid and waivers

Medicaid covers care private insurance often does not. Many states also run waiver programs for home and community services, and some have waiting lists that run for years. Apply early, even before you need the services.

ABLE accounts

An ABLE account lets a person with a disability save and pay for disability-related costs without losing SSI or Medicaid. Up to $100,000 in the account does not count against SSI. Yearly contributions are capped at the federal gift tax exclusion. The disability must have started before age 46. After the account holder dies, a state may claim what is left to repay Medicaid.

Planning ahead

If you cannot care for them

Name a guardian in your will, and a backup. Talk with them now. Then write a letter of intent: what your child's days look like, what they love, what works, and what you hope for them. It is not a legal document, and it is often what the next caregiver says they needed most.

Leaving money

Money left directly to your child, including life insurance, can end SSI and Medicaid. Leave it to a special needs trust instead.

Trust	Funded with	After the person dies
Third-party special needs trust	Money from parents, grandparents and others	What is left goes to whoever you choose
First-party special needs trust	The person's own money, such as a settlement	Medicaid is usually repaid first

Name the trust on life insurance and retirement beneficiary forms, and tell relatives to leave gifts to the trust, not to your child.

At 18

At 18 your child is a legal adult, and you can no longer make decisions for them automatically. There is a range of options, from supported decision-making agreements and powers of attorney to guardianship. Guardianship is a court process that removes rights, and courts increasingly expect families to consider less restrictive options first. Start talking with an attorney a year or two before your child turns 18.