Respite care for high-support adults: finding and training providers

Alicia had already hired three workers in six weeks before Marisol answered the ad. Each of the first three had lasted less than two weeks and each had left with a version of the same sentence about not being trained for a client this complex. Alicia had hired all three of them the way you buy plywood in a hurricane. Marisol got a paid interview. She got ten hours of shadowing. She got ten more of paired work before she was ever alone with Josh. That was two years ago. Two years later she calls Josh her guy and Josh calls her by her name. This is the post about how Alicia stopped hiring in a hurricane.

What “high-support” actually means for hiring

The industry uses the phrase “high-support” as shorthand for adults who need one-to-one assistance with most or all activities of daily living, who communicate through methods other than typical speech, who may exhibit behaviors that require training to support safely, and who cannot be left unsupervised for meaningful stretches of time. In the DSM classification, this is often Level 2 or Level 3 autism.

Hiring for high-support work is different from hiring for babysitting. It is closer to hiring a nurse’s aide who has to also be a coach, a translator, and a companion. The pay range and the training expectations should match that job description, not the babysitter equivalent.

The workforce crisis you are hiring inside of

The National Core Indicators Intellectual and Developmental Disabilities Adult Family Survey has documented, year after year, that families report unmet respite needs at approximately half of respondents. Direct Support Professional turnover in Medicaid-funded settings runs at forty to fifty percent annually, per the National Alliance for Direct Support Professionals and successive NCI-IDD staff stability reports.

You are not hiring in a labor market. You are hiring in a workforce collapse. The person you are looking for is being courted by fast food, warehouse work, and hospital environmental services, all of which pay more, offer benefits, and require less emotional labor.

Every decision you make about wages, hours, respect, and inclusion has to be made against that backdrop. “Competitive” pay is not competitive if it is below the McDonald’s down the street.

Where the good ones come from

In fifteen years of watching families staff their homes, the same five channels produce nearly every hire that lasts. Local university nursing, social work, and psychology programs, where students are looking for clinical hours and often want the exact experience you can offer. Church and community-of-faith boards, where the retiree who wants meaningful work reads bulletins. Existing worker referrals, because your best current employee knows other people who would show up. Respite registries and family-hire pools run by state or county agencies. And Craigslist, still, because the applicant who reads a well-written ad on Craigslist is the applicant who reads.

Agencies are a sixth channel and they are useful for backup and for scheduling flexibility. They are rarely the source of your primary long-term worker because agency workers cycle through faster and are matched by scheduling algorithms rather than by fit.

The paid interview

Two hours. Paid at the hourly rate you are advertising. First hour is talk. You describe the job, the person, the schedule, the pay, the training path. She asks questions. You listen for what she is worried about, because what she is worried about tells you what she knows.

Second hour is with your adult, doing something normal. Making a sandwich. Watching a preferred show. Going to the mailbox and back. You do not stage a challenge. You watch what your adult does. You watch what the applicant does when your adult does what your adult does.

Trust your gut at the end of hour two. If your adult relaxed, hire her. If your adult tensed up and did not relax, thank her for coming. Pay for the two hours regardless. The two hours are diagnostic information you cannot get any other way and they are worth every dollar.

Onboarding: ten and ten and ten

Ten hours of shadow. She observes the current caregiver (you, another worker, a family member) doing the routine. She takes notes. She asks questions. She does not intervene except when invited. During shadow you narrate what you are doing and why. “I’m giving her ten seconds because that is her processing window. Watch her eyes shift.”

Ten hours of paired work. She does the routine. You are present. You correct in real time, quietly. You catch mistakes early. You praise what she does well. She learns the choreography of your adult’s day.

Ten hours of independent work with you nearby but not in the room. You are in the house. You are available. She is running the show. She calls you if she needs you. Most of the time she does not.

Only after these thirty hours do you leave the house on her shift alone. That is thirty hours you spend before you buy back your first free afternoon. It feels like a lot until you realize that skipping it is why the first three workers quit.

Training as retention

Workers stay when they feel prepared. Workers leave when they feel out of their depth. Training is not a checkbox you complete. It is the ongoing communication that keeps her feeling like a professional.

Weekly check-ins for the first month. Fifteen minutes each. What went well. What was hard. What would help. Written summary you both sign. Monthly after that. Address issues the moment they surface, not at annual review. Praise generously and publicly. Correct privately and quickly.

Pay for training. If she attends a de-escalation workshop or a medication administration course, cover the cost and pay her time. Frame it as career development. Because it is.

Funding the position

Medicaid HCBS waivers include respite hours in most states. The number of authorized hours is often below the number of hours you need. That is not a signal to give up. That is a signal to layer.

Layer one: waiver hours for the core weekly respite. Layer two: state or county family-hire programs (Home Help in Michigan) for family-member respite. Layer three: private pay for the buffer. Layer four: mini-grants from The Arc, Autism Society, or local disability nonprofits for training costs and one-time expenses. Layer five: community respite through a faith community or mutual-aid network.

None of these layers alone will get you where you need to be. All of them together might.

The bench (why you need three)

One worker is a fragile system. She gets sick. She has a wedding. She has a hard week. When she cannot come, the entire system falls back on you, which is the situation you were trying to buy your way out of.

Two workers is better and still fragile. If both cannot come the same week, back to zero.

Three workers is a bench. Primary at twenty hours a week. Secondary at eight hours a week. Third at four hours a week or on-call. All three trained. All three included in the family group text. All three treated as team members, not spares. The third worker rarely covers a shift and always covers the shift the primary cannot.

Building a bench of three takes eighteen months. It is worth eighteen months. It buys you the sustainable version of the life you are trying to lead.

Jim Palasty is the founder of OASIS for Autism and a single father of an adult autistic daughter in Michigan.