Self-direction as a survival strategy: when you can’t find a worker, become the employer

The agency called for the eleventh straight week to say they still had nobody. Twenty authorized hours, zero delivered, and a supports coordinator who kept using the word “unfortunately.” Then somebody at a support group asked a question that reframed the whole thing. If you cannot find a worker through them, why are you still asking them to find one?

The crisis that made self-direction mandatory

Let me establish the conditions first, because self-direction reads as an ideological preference until you look at the staffing numbers.

ANCOR’s 2025 workforce survey of 469 community-based providers across 48 states and the District of Columbia found turnover hovering near 40% nationally and vacancy rates running 12 to 15%. Sixty-two percent of providers reported turning away new referrals because they did not have the staff. Twenty-nine percent discontinued programs entirely.

Translate that into your life. Your adult child has authorized hours. An agency is contracted to deliver them. The agency cannot hire anyone at the rate your state pays, so the hours go undelivered, and the system records that your adult child is receiving services because the authorization exists.

The authorization is not the service. This is the central fiction of the current era, and every family living it knows it.

What self-direction actually gives you

Self-direction, sometimes called consumer direction, participant direction, or self-determination depending on the program, hands two kinds of authority to the family.

Employer authority means you recruit, interview, hire, schedule, supervise, and if necessary fire the person who supports your adult child. In most arrangements, that person can be a relative, a neighbor, a family friend, or a former staff member who left an agency.

Budget authority means you have some control over how an individual budget is spent across the services in the plan, rather than an agency deciding.

A fiscal intermediary sits behind all of it. They process payroll, withhold and remit taxes, handle workers compensation, run background checks, and keep the arrangement compliant. You are not personally running an accounting department, and you should not accept an arrangement that asks you to.

Every state and the District of Columbia now offer some version of this for personal care. That universality is recent and it is the result of thirty years of advocacy by people with disabilities who wanted to choose who touches their body.

Michigan’s three pathways, and how they differ

Home Help is a Medicaid State Plan personal care benefit. No waiting list, currently $17.13 per hour statewide, and a parent can be the paid provider for an adult child 18 or older. Spouses cannot. This is the fastest door and the one families most often do not know about.

Habilitation Supports Waiver self-determination gives budget authority over waiver services including Community Living Supports. This is the deeper arrangement, and it is slot dependent, meaning you have to be on the waiver.

MI Choice Waiver self-determination serves adults who meet nursing facility level of care, with its own self-determination arrangements.

They stack rather than compete. Many families use Home Help for personal care hours and waiver self-determination for community supports. Ask about all three by name, because a coordinator asked generally about “self-direction” will often describe only the one they administer.

The honest downsides

I am not selling this. Self-direction moves work onto you, and I have watched families burn out on it.

You become a recruiter. In a labor market where agencies with HR departments cannot fill positions, you are competing for the same people with a Facebook post and a phone number.

You become a scheduler. When your worker is sick, there is no agency bench. There is you.

You become a manager, which for family caregivers means supervising someone who may be your sister, your neighbor, or your adult child’s friend. Firing that person is not the same as an agency reassigning staff.

And the rate the budget supports is the rate the state set. Self-direction gives you control over who does the work. It does not give you more money to pay them with, which is why the Waskul costing-out requirement matters so much.

What you get in exchange is reliability. The neighbor who has known your adult child for six years does not turn over at 40% a year. That is the entire trade.

Your practical next steps

This week. Email your supports coordinator and ask which specific self-direction arrangements your adult child qualifies for today, by program name, and what the next step is for each. Ask for the answer in writing.

Also this week. If your adult child is 18 or older and has Medicaid, start the Home Help application regardless of what else you are pursuing. It has no waiting list and it does not conflict with waiver services.

At the next planning meeting. Request self-direction explicitly and ask for the individual budget in writing, broken out line by line. Then check whether the budget can actually purchase the hours the plan authorizes at a rate a real human will accept. If it cannot, say so at the meeting and put it in writing afterward.

Before you hire. Confirm who runs payroll, who covers workers compensation, what the background check requires, how overtime is funded, and what happens when the fiscal intermediary makes an error. Get all of it in one email before your worker’s first shift.

Nobody is coming to fix the staffing crisis this year. The wage floor that caused it was set by legislatures over two decades, and it will take legislatures to raise it. In the meantime, the fastest path from twenty authorized hours to twenty delivered hours usually runs through somebody your family already knows. Go find them.