ChSNC cheat sheet

Lifetime planning is a continuous process, not a single event: it begins at diagnosis or identification and is revisited at each transition (school exit, employment, residential change, parental incapacity, parental death).

Key transition ages under U.S. special education law: an individualized education program must include transition planning no later than the first IEP in effect when the student turns 16, and most states begin earlier; special education eligibility ends at graduation or age 21-22 depending on state law.

Definitional distinction: an impairment is a physical or mental condition; a disability is an impairment interacting with environmental barriers; handicap is the disadvantage that results. Eligibility for benefits turns on the specific program's definition, not the diagnosis.

Supplemental Security Income (SSI) for a child requires the child to meet the Social Security Administration's childhood disability standard (marked and severe functional limitations) and the household to meet income and resource limits; at age 18 the household income test is replaced by the individual's own income and resources.

SSDI childhood benefits (disabled adult child) are available if the disability began before age 22 and the parent is deceased, retired, or disabled; these benefits are not means-tested and can be preserved through a special needs trust.

Continuum of decision-making: full autonomy, supported decision-making, power of attorney, guardianship, and conservatorship. Guardianship is the most restrictive and is granted by a court only on a finding of incapacity; supported decision-making is the least restrictive.

Needs assessment should inventory seven life domains: residential, vocational/day, education, health and medical, social/recreational, financial/legal, and advocacy/decision support. Gaps in any domain become planning targets.

A letter of intent is a non-binding document describing the person's history, preferences, routines, medical needs, and caregivers; it complements but does not replace a will, trust, or guardian nomination.

Planning horizon rule of thumb: plan for the lifetime of the person with a disability and for the parents' lifetimes simultaneously, then stress-test the plan against the death or incapacity of each caregiver.

A first-party special needs trust (also called a self-settled or d4A trust) holds the beneficiary's own assets, must be established before age 65 for the Medicaid exception, and requires a Medicaid payback of remaining assets at death.

A third-party special needs trust is funded with assets belonging to someone other than the beneficiary; it has no payback requirement and no age-65 limit, and remaining assets can pass to other heirs.

A pooled special needs trust is a master trust run by a nonprofit; the individual has a separate sub-account, Medicaid payback applies, and the sub-account can be established by the person, a parent, grandparent, legal guardian, or court.

Trust distributions must be supplemental, not supplanting: paying directly for food, shelter, or cash to the beneficiary can count as in-kind income and reduce SSI (roughly one-third reduction for shelter) or jeopardize Medicaid eligibility.

ABLE accounts permit tax-free savings for disability expenses; annual contributions are capped at the federal gift tax exclusion amount, aggregate limits are set by state, and funds used for qualified disability expenses are not counted for means-tested programs.

An SNT should never be funded with the beneficiary's own assets without legal review, because commingling and improper funding can destroy the trust's favorable treatment.

Guardianship alternatives include limited guardianship, power of attorney, health care proxy, representative payee, and supported decision-making agreements; each has different scope and revocation rules.

Estate planning for parents should coordinate a will, a special needs trust, life insurance, beneficiary designations, and a letter of intent; beneficiary designations override the will, so retirement accounts and insurance must name the trust or a proper beneficiary.

Key documents checklist: will, revocable living trust, special needs trust, durable power of attorney, health care directive, guardian nomination, letter of intent, and a benefits inventory.

Lifetime cost projection: estimate annual incremental costs (medical, therapies, respite, transportation, housing, assistive technology), inflate at a health-care or general inflation rate, and multiply by the expected number of years of need; discount to present value for funding targets.

Funding vehicles to layer: special needs trust (third-party), ABLE account, life insurance (term and permanent), and government benefits (SSI, SSDI, Medicaid waiver). Each has different tax and means-testing treatment.

Life insurance sizing rule: face amount should cover the present value of lifetime care costs plus final expenses minus existing resources, and should be owned by or payable to the special needs trust, not the beneficiary.

Medicaid Home and Community Based Services waivers fund services not covered by standard Medicaid; waitlists are common, so families should apply early and document need.

SSI federal benefit rate is adjusted annually; state supplements vary. SSI eligibility generally requires countable resources below the individual limit and countable income below the federal benefit rate.

ABLE account qualified expenses include education, housing, transportation, health, assistive technology, and employment support; non-qualified withdrawals are taxable and subject to a 10% penalty on earnings.

Budget model: household cash flow should separate the person's dedicated expenses from general household expenses; survivors' needs and the caregiver's retirement funding must be modeled together.

Risk management: review guardianship, trust, and beneficiary designations after every major life event (marriage, divorce, death, move, benefit change) and keep a current benefits inventory.

Coordination rule: any asset or income change should be tested against SSI, SSDI, Medicaid, and housing subsidy rules before it is executed, because a small distribution can trigger a large benefit loss.