The person on one page, the benefits and what has to be reported, who helps make decisions, and who steps in next.
Supporting an adult with a disability means keeping many programs, people and papers in order, often for decades. The person should be at the center of it, in their own words where possible.
The three things to get right are the benefits and what must be reported, who helps make decisions and on what legal basis, and who steps in when the current caregivers cannot.
Start with an "about me" page, filled in with the person. It helps every new support worker, doctor or ER.
Keep a list of the support team alongside it: doctors, the case manager or service coordinator, support workers, and the day program or employer.
| Program | Based on | Good to know |
|---|---|---|
| SSI | Financial need | Limits on income and what the person owns. Comes with Medicaid in most states. |
| SSDI | Work history | Paid on the person's own work record. Medicare starts after 24 months of SSDI. |
| Childhood disability benefits | A parent's work record | For adults disabled before 22. Paid when a parent retires, becomes disabled or dies. |
| Medicaid and waivers | State rules | Waivers fund home and community services. Some have long waiting lists. |
SSI must be told about changes in income, living arrangements and resources by the 10th of the month after the change. Late reports can lead to overpayments that have to be paid back. Keep a log of what you reported, when, and how.
Someone disabled before 22 may qualify for benefits on a parent's record when that parent retires, becomes disabled or dies. Call Social Security when any of those happen.
Work does not automatically end benefits. SSI counts only part of earnings, and SSDI has trial work rules. Ask Social Security or a benefits counselor before starting or changing a job.
| Arrangement | What it does |
|---|---|
| Supported decision-making agreement | The person makes their own decisions with help from people they choose. Recognized in a growing number of states. |
| Powers of attorney | The person names an agent for money or health care. They must be able to understand what they are signing. |
| HIPAA authorization | Lets doctors share information with the people named. |
| Representative payee | Appointed by Social Security to manage benefit payments only. |
| Guardianship or conservatorship | A court gives decision-making power to someone else. It removes rights and is hard to undo. |
Courts increasingly expect families to try options that keep the person's rights before asking for guardianship. Ask an attorney in your state which arrangements it recognizes.
Many adults with disabilities are supported by aging parents. The plan for what happens next is the one most often left undone.
Money left directly to someone on SSI or Medicaid can end those benefits. A third-party special needs trust avoids that and can pay for things benefits do not.
Where the person will live is often the biggest question in the future plan. Options range from living with family, to their own apartment with support, to shared or group homes. Medicaid waivers can pay for support at home. Housing vouchers can help with rent, but waiting lists in many areas are long, so apply early.
The Adult with a Disability Kit has five worksheets: about me, support and daily life, benefits, who helps make decisions, and the future plan.
Download the Adult with a Disability Kit (PDF)Paper goes stale. Hubstone holds the same record and keeps it current, and you choose who sees each page.
General information, not legal, medical or financial advice. Requirements differ by state.