The short answer: name one person who could step in tomorrow, and write down what they would need to know on day one. Then start a separate, slower conversation about where your person wants to live and what would pay for it. Planning can reduce uncertainty. It cannot guarantee that care will be available.
This is the question underneath a lot of caregiving, and it usually arrives as fear rather than as a task: what happens to the person I care for if I die, get sick, or simply cannot keep doing this. It is worth separating into two problems, because they have different answers. An unexpected absence is a handover problem, solved by making information findable and naming a stand-in. A planned transition is a housing, funding, and consent problem, solved slowly and with the care recipient at the center. Respite gives you a break today; it does not settle who will be there in five years.
An unexpected absence: who steps in tomorrow
The first task is not legal. It is making sure a stand-in is not starting from nothing.
This is what a written care plan is for. The CDC describes it as a summary of a person's health conditions, care needs, and current treatments, and says it helps keep care consistent when caregivers change. Its Complete Care Plan form asks for name and date of birth and contact details, health conditions, medicines with dosages and when and how they are given, health care providers and their contact details, health insurance information, and emergency contacts. The CDC also suggests keeping the plan where every caregiver can see it, and describing the person well enough that someone new knows what they enjoy.
Add the things that live only in your head: what a normal day looks like, what distress looks like and what helps, and which agencies or programs are already involved. The National Institute on Aging publishes caregiver worksheets, including a checklist for gathering important records and documents, and advises knowing where advance directives are and which document names the person who can make decisions when your person cannot. Then name a specific person, tell them, and make sure they can actually reach the plan.
If services are already in place, your Area Agency on Aging is a real contact point rather than an abstraction. The Eldercare Locator, a public service of the Administration for Community Living authorized under the Older Americans Act, connects older adults and caregivers to those local agencies. You can reach a specialist on 800-677-1116 or by chat, weekdays 8am to 9pm Eastern. For a care recipient who is disabled rather than older, ACL funds a companion national line, the Disability Information and Access Line, for local services supporting community living.
A planned transition: the care recipient's wishes come first
Families often arrive at this conversation ready to decide. Federal rules point the other way.
For Medicaid home and community-based services, the person-centered planning process must give the individual the information and support needed so that they direct the process to the maximum extent possible and can make informed choices. They may choose a representative and others to take part. The plan must reflect choice about which services they get and from whom, and the written plan must record that the setting they live in was chosen by them from among options, including non-disability-specific settings and an option for a private unit in a residential setting. There must also be a way for the person to ask for the plan to be updated.
That is a useful standard even outside Medicaid: your knowledge of the person is evidence, not authority.
Where decision-making capacity is a live question, guardianship is not the only route and often not the least restrictive one. ACL promotes supported decision-making, in which a person keeps the right to make their own decisions with help from people they choose. Support can be informal or written down, and it can cover only the areas where help is wanted. One thing to be clear about: unless separate legal instruments such as powers of attorney exist, supporters have no legal authority to consent or act on the person's behalf. Other alternatives ACL lists include powers of attorney, joint bank accounts, bill-paying services, and medical or educational release forms.
Finding help: the entry points that exist now
Two federal front doors are worth knowing.
The Eldercare Locator routes to Area Agencies on Aging and community organizations, covering things like meals, home care, transportation, and caregiver supports including respite. Through the Older Americans Act National Family Caregiver Support Program, states and tribes work with those agencies to offer five core services to family caregivers: information about services, help accessing them, counseling and support groups and training, respite care, and supplemental services.
One detail matters for families whose "child" is now an adult: older caregivers providing care to their own adult children with disabilities can be served by that program. If you are an aging parent caring for a middle-aged son or daughter, you are not outside the system's definition of a caregiver.
When you make contact, the useful questions are concrete. What is available now, not only what has a waiting list. What does it cost and what is counted. What is the wait, and what happens to our place in line if circumstances change. Who reviews the decision if the answer is no. For pre-screening which benefit categories are worth checking, GiveCare's benefits finder is a starting point rather than a determination; eligibility is settled by the program, not by us.
When there is no suitable option
Sometimes the honest answer is that the thing you need does not currently exist where you live. That is worth naming rather than planning around.
Home and community-based services are largely optional for states to offer, and states may cap how many people receive them, which produces waiting lists when demand exceeds the number of funded slots. KFF found that between 2016 and 2024 the number of states reporting waiting lists moved between 37 and 41, standing at 40, with an average wait of 40 months in 2024. MACPAC found state estimates of wait times ranging from under one year to 14 years.
Two caveats keep this from being a single number. Waiting list length is not a clean measure of unmet need, because states screen for eligibility at different points and some do not screen at all, which makes lists incomparable between states. And most people waiting for waiver services remain eligible for other kinds of home and community-based services in the meantime.
So the practical move on a long wait is to ask what you can receive now while the list runs, and to ask who reviews the decision. Under a final rule on access to Medicaid services, states will be required to report the number of people on waiting lists starting in 2027, which will make the picture clearer than it is today.
What to check before you make the calls
- Which agency is already involved, and do you have a named contact there rather than a main line
- Whether your stand-in knows they are the stand-in, and can reach the written list
- What your person wants, asked directly, and recorded in their words
- Whether decision-making support is needed, and whether the least restrictive option would do
- Which legal documents exist, which do not, and who holds them
- What is available now while any waiting list runs
- Whether the rules you have been told are state law, program policy, or one agency's practice, and who reviews them
Sources to verify
- CDC — Steps for Creating and Maintaining a Care Plan
- National Institute on Aging — Caregiver Worksheets
- Eldercare Locator
- ACL — Connecting People to Services
- ACL — National Family Caregiver Support Program
- ACL — Alternatives to Guardianship
- 42 CFR 441.725 — Person-centered service plan
- 42 CFR 441.301 — Contents of request for a waiver
- KFF — Waiting Lists for Medicaid HCBS, 2016 to 2024
- MACPAC — State Management of HCBS Waiver Waiting Lists
- GiveCare Benefits
Rules, costs, and waiting times differ by state and by program, and they change. Verify anything here with the official program administrator before you rely on it.
Common questions
Who will take care of my disabled child or parent if I die?
There is no single national answer, and no plan can reserve a place in advance. The practical first step is a written care plan and a named stand-in. The CDC says a care plan helps keep care consistent when caregivers change, and its form covers health conditions, medicines with dosages and timing, providers, insurance information, and emergency contacts. The Eldercare Locator (800-677-1116, weekdays 8am-9pm ET) connects families to their Area Agency on Aging, the local starting point for caregiver support.
What is a caregiver emergency backup plan?
It is the set of facts someone else would need if you were suddenly unavailable, kept somewhere findable. The CDC's Complete Care Plan form is a usable starting template, and the National Institute on Aging publishes worksheets for gathering the matching records and documents. It is different from long-term planning. An emergency plan answers "who steps in tomorrow"; long-term planning works through where your person wants to live and what would fund it. Both matter, and doing one does not complete the other.
Does my family get to decide where my adult child lives?
Not unilaterally. Under federal Medicaid home and community-based services rules, the planning process must be directed by the person receiving services to the maximum extent possible, and the written plan must reflect a setting the individual chose from among options. Family knowledge matters, and it sits alongside the person's own wishes rather than replacing them.
How long are the waiting lists for home care?
It varies widely and is not comparable between states. KFF found 40 states reported waiting lists, with an average wait of 40 months in 2024; MACPAC found state estimates ranging from under a year to 14 years. Importantly, most people on a waiting list remain eligible for other kinds of home and community-based services while they wait. Ask your Area Agency on Aging what is available now, not only what you are waiting for.
Is this the same in every state?
No. It varies. Home and community-based services are largely optional for states, so what exists, what it costs, and how long the wait runs all differ by state and sometimes by program within a state. Verify current rules with the official program administrator.