MassHealth will not pay for care a parent would ordinarily give a child that age. Hours come only from the help your child needs beyond ordinary parenting for their age, which is why a five year old who needs feeding scores differently than a fifteen year old who needs the same thing.

There is a separate pediatric evaluation for this, not the adult one with the ages changed.

What does the parental responsibility rule actually say?

Two specific things, and they are the ones that cut the most hours.

• The household tasks are yours. Parents and legal guardians are responsible for the instrumental activities for a child under 18, meaning meals, laundry, housekeeping and shopping. Those are scored only if a parent is physically unable to do them.
• Medications are yours. Parents and guardians are responsible for administering medication to a child. Again the exception is a physical limitation, and even then a parent has to be available to direct the assistance.

Physically unable means exactly that. A parent working two jobs is not physically unable, however true the exhaustion is. A parent with their own disability may well be, and that belongs in the record.

How does an evaluator decide what is ordinary for the age?

There is a published reference for it. The PCA operating standards include an appendix called the schematic of age ranges at which non disabled children master functional items, and evaluators are pointed to it. It is not a secret and you are entitled to understand how your child is being measured, so ask what the appendix says about your child's age for the tasks in question.

That reframes the conversation usefully. Instead of arguing that your eight year old needs help dressing, which many eight year olds do, the point is that your eight year old needs a level and kind of help that a non disabled eight year old does not. Say it that way.

Which tasks do get scored for a child?

The same activity categories as an adult: mobility including stairs, transfers and repositioning, passive range of motion, bathing, hair washing, grooming, dressing, eating, toileting, medication assistance, and other healthcare needs such as suctioning, ostomy care, oxygen, CPAP or BiPAP, ventilator and cough assist.

The arithmetic is the same too. Minutes per episode times episodes per day times days per week, divided by 60, rounded up to the nearest 15 minutes. If you want the full mechanics, see how MassHealth decides how many PCA hours you get.

What is specifically not paid?

• Toilet training. MassHealth does not pay PCA time for it. Incontinence management is different and is scored under toileting, so the distinction is worth making carefully at the visit.
• Supervision and monitoring while eating. Physical help with eating counts. Sitting with a child who can feed himself does not.
• Cueing and prompting generally. The program pays for hands on help. This is the single biggest reason families of children with autism or intellectual disability are told the hours are not there.

Can I be paid as my own child's PCA?

No. The parent of a member under 18 cannot be the paid attendant, and that includes adoptive and foster parents. Nor can a spouse or any legally responsible relative.

An adult sibling, a grandmother, an aunt, a family friend or a hired attendant can be. For many families the practical answer is a grandparent or an adult cousin who is already around, rather than a stranger. One thing in your favor as a parent: you can give the attendant their orientation yourself, because a parent of a minor child is one of the three roles allowed to do that.

How are overnight needs counted?

On a separate track with better rounding, which matters enormously for children. Night means midnight to 6 in the morning, night hours round up to the whole hour rather than 15 minutes, and the tool sets a floor of two hours.

So if your child needs repositioning twice a night, or suctioning, or a feeding pump dealt with at 2 in the morning, describe it in detail. Parents routinely undersell the nights because they have stopped noticing how broken their own sleep is.

What should I bring to the evaluation?

• A two week log with times, not a summary. Date, task, start, finish, and what you physically had to do.
• The therapy notes. Physical therapy, occupational therapy and speech evaluations describe function in exactly the language the tool uses.
• The equipment list, including what you have, what is broken and what was recommended but never funded.
• The bad week, not the good one. School vacation, an illness, a seizure cluster, a growth spurt that changed every transfer.

What else should we be looking at?

PCA hours are rarely the whole answer for a child, and sometimes they are not the first thing to pursue.

• Under three, Early Intervention is the state system and it is free regardless of income. Start there.
• Eligibility routes. Ask about the Kaileigh Mulligan program and CommonHealth. These are the two paths that get a child with significant disabilities onto MassHealth when family income would otherwise be too high, and no PCA conversation goes anywhere until the child is eligible.
• School hours. Nursing and aide support during the school day runs through the district and the individualized education program, not through PCA. Those are different fights with different rules.
• DDS and waiver programs, depending on the diagnosis, which can offer in home supports PCA does not cover.

Who helps with this?

A personal care management agency does the intake, the pediatric evaluation, the prior authorization and the skills training. Care Remedy serves eastern and central Massachusetts from offices in Woburn, Brockton and Springfield, and we will tell you honestly before the visit whether your child's needs are likely to score, because a family that has been fighting for a year does not need another maybe. Call 781-957-8076 or email pcm@careremedy.com.

Our aides and attendants are trained, background checked and insured but are not nurses and cannot administer medication. Program rules are set by MassHealth and change from time to time.