Algorithms Decide How Many Home Care Hours You Get · Hanh D. Brown

A man in Arkansas had fifty six hours of help a week. A nurse had sat in his house and decided that.

Then the state changed how the number got made. The nurse still came. The nurse no longer decided.

That is the part of this story that gets missed. The tool did not just change the answer. It removed the person who could disagree with it.

Here is how those hours actually get set. The rules that protect you are better than I expected.

The help itself has a name in the paperwork. Home and community based services (HCBS).

What is an HCBS waiver?#

Start with the money, because the money explains the shape of everything else.

Medicare pays for very little long term help in the house. Bathing, dressing, meals, getting from the bed to the chair. That work is called long term care, and for most families the payer is Medicaid.

Medicaid was built around institutions. Paying for a nursing home was the default. Paying for help at home needed permission, and the permission is called a waiver.

That is the waiver. A state asks the federal government to let it spend Medicaid money on care at home rather than in a facility. The government says yes, with conditions.

Three things follow, and they matter.

• Home help is optional for a state.
• Each state designs its own version.
• Each state needs a method to set the hours.

A nursing home bed is not optional in the same way. Your neighbour two states away lives under different rules. The third item is where software enters.

How does a state decide how many home care hours you get?#

Somebody assesses you. That part has not changed. A nurse or a case worker comes to the house, asks questions, and writes down what you can and cannot do.

What changed is what happens to those answers.

In the older way, the nurse used judgement. She weighed what she saw in the room and set the hours. Two people with similar paperwork could get different hours, for reasons a person could explain out loud.

In the newer way, the answers go into a scoring tool. The tool sorts you into a category. The category carries a number of hours.

A form with hundreds of questions sounds thorough, the way a very long menu sounds like a good restaurant. Length is not fit.

Ask a narrower question. Can anything on that form carry what is actually true about your morning?

Sometimes yes. Often no. A tool records what it was built to record, and a person notices what is in front of them. Those are different jobs. Swapping one for the other is a choice.

What happened in Arkansas with the RUGs algorithm?#

Arkansas is the case with a written record, which is why it is worth your time.

The program was called ARChoices in Homecare. For about seventeen years, the state set a person’s attendant care hours on the professional judgement of a registered nurse who assessed them. Under that method, the people who later sued had been assessed at a maximum of fifty six hours a week.

Then the state moved to a system called Resource Utilization Groups, or RUGs. The state supreme court described it as based solely on a set of complex computer algorithms.

Here is how it worked. A 286 question assessment fed the algorithms. The algorithms placed the person into one of twenty three tiers. Each tier carried an allocation of weekly hours set by the department.

Now the sentence that matters most, and it is the court’s own description. Once a person is assigned to a tier, department nurses do not have the discretion to move them to another tier based on their specific needs.

Read that twice. The nurse still visits. She cannot act on what she sees.

That is the whole story in three sentences. Everything else is procedure.

The people who sued were low income adults with profound physical disabilities. They alleged that the switch to the computer algorithm cut their attendant care hours by an average of 43 percent. That is their allegation as the court recorded it, not a finding of fact.

Their legal argument was not really about the software. They argued the rule behind it had not been properly made, that it did not substantially comply with the state Administrative Procedure Act. The department had issued a 242 page packet with a notice of rulemaking, a proposed rule and a final rule.

A trial court granted a temporary restraining order, finding they were likely to succeed and would suffer irreparable harm without it. The state appealed. The Arkansas Supreme Court affirmed.

Nobody in that case had to prove the algorithm was wrong. They had to show the state had not followed the rules for making a rule. That is a lower wall. It is where these cases get won.

Can a state cut your hours without explaining why?#

No. The rules are specific and they are on your side.

They sit in the Code of Federal Regulations (CFR), the book of final federal rules. The page you want is 42 CFR 431.210.

A notice reducing your services must contain five things.

• The action, and its effective date.
• A clear statement of the specific reasons.
• The regulations that support it.
• Your right to a hearing.
• When Medicaid continues if you ask.

Look hard at the third item. The notice must name the rule behind the cut.

Put the letter on the desk in front of you and find that line with your hand. It can be the shortest line on the page, and it is the one that does the most work on any day you decide to fight.

That requirement is why the Arkansas argument worked. If a notice must point at a rule, the rule has to exist and has to have been made properly. A cut resting on a rule that was not validly adopted is a cut resting on nothing.

So when a letter arrives saying your hours are dropping, the first question is not whether the score was right. The first question is which rule the letter names.

What are your due process rights when software makes the cut?#

This is the part to keep. It deserves plain words.

Under 42 CFR 431.230, if the agency sends the required advance notice and you request a hearing before the date the action takes effect, the agency may not reduce or terminate your services until a decision is made after that hearing.

Say it in kitchen table words. Appeal before the date on the notice and nothing changes while you argue.

It works like a library book: renew it before the due date and you keep it. Ask before the date and the hours keep coming. Ask after it and they stop while you wait.

There is a catch. Know it before you rely on the rule.

If the hearing goes against you, the agency may start recovery procedures. It can recoup the cost of services you received only because of that continuation. That sits in the same section, at subsection (b).

So the choice is real. It is not free.

The hours are what keeps somebody in their own home. A delayed cut is worth having. It should still be a decision you make with your eyes open.

Two more things worth writing on the envelope. The reasons and the rule must be in the notice already, so you do not need new information to file. The deadline is the effective date. Not the day you finish gathering paper.

I am not handing you a list, because I could not build one that would stand up.

No current national inventory could be pinned to a primary source in this run. A half remembered list of states gets copied around until somebody relies on it.

Arkansas is documented because it was litigated. The record is public.

What works instead is finding out about your own state, which is more useful anyway.

Ask your case worker, in writing, three questions. What method sets my hours? Is there a scoring tool or a tier system? If there is, can a nurse change the result based on what she sees?

The third question is the one that matters. In Arkansas the answer was no. The court wrote it down.

Keep the reply. A written answer that a tool cannot be overridden is the single most useful piece of paper you can hold if the hours are ever cut, because it turns a vague complaint into a specific one.

Your state’s waiver application and its Medicaid provider manual are public documents, and the number of hours attached to a category can be in one of them. A case worker who cannot answer the third question is telling you something even when they do not mean to.

People stay in their own houses because somebody comes in the morning. That is what these hours are. Not a benefit category, not a tier, a person at the door at seven in the morning so a family member can go to work.

For the caregiver in that household, the tier number is not the point. The hour is.

Say a letter lands saying that is being cut. You now know what it has to contain. You know the date that matters.

Write the date on the envelope first. Then read the wider map in who decides what Medicare pays.

If a private plan runs your benefit, Medicaid managed care denials is the one you want. To check any claim here, use check a policy claim.

The federal program page for home and community based services is the official starting point. For how differently states run these programs, see the state by state picture.