So you didn't get that many PCA hours.

The good news is you can probably get more by firming up your arguments and filing for an appeal.

Filing for an appeal

To appeal the number of PCA hours that MassHealth approved, you send in the attached sheet to the mailing you got from MassHealth with its decision. You can send in any supporting documentation at this time, but also you can send in additional documentation up to 10 calendar days before the appeal. You need to send the appeal in within the timeframe listed on the decision. See here for more information.

Preparing for the appeal

When you received the decision from MassHealth, they should have listed exactly what they modified compared to the requested hours. So if, for example, you requested 5 minutes, 6 times daily, 7 days a week ("5x6x7") for mobility transfers, and they approved you for 3 minutes 6 times daily, that should be listed on the decision.

Compare the decision letter with what was requested. If you don't have the evaluation that was requested, reach out to the PCM that did the evaluation to ask for a copy.

For each item that was modified by MassHealth, write down why you think you should get the minutes you requested. Does it take longer to do that activity? Why? Are you doing it more times per day than they say you are? If the member is a minor, think about how that activity is more time-intensive than it would be for a typically-developing child of the same age. (What you cannot do is request more time than what you initially were evaluated for, just the difference between that and what MassHealth decided. This is why it's important to advocate for lots of time during the evaluation process.)

For items that were blanket denied, consider if a doctor's note would help your case. For example, passive range of motion (stretching) is often denied for young children. Having a PT or doctor write a note explaining medical necessity could get that time approved. But for something that just requires an explanation of why it takes extra time (spasticity, injury, extra things that must be done), just writing it down yourself should be sufficient. Use your best judgement!

For Instrumental Acts of Daily Living (IADLs) like housekeeping, food prep, medical transport, and laundry, MassHealth will generally blanket-deny requested time if the member is a minor. However, the PCA Policies and Procedures handout states that "Special consideration may be given for IADL’s if the documentation supports the reason(s) the parent(s) or legal guardian(s) cannot perform the task(s) or if the task(s) is/are above and beyond what would be expected of a non-disabled child of the same age."

Here is a list of guidelines that MassHealth uses for ADLs and IADLs.

Here is a slightly different document outlining common considerations for assessing time per task.

Here is a graphic showing what activities a child is expected to be able to do independently depending on their age.

Sometimes it's helpful to look at previous hearings and rulings - they are public and searchable. The filters don't work well, but if you scroll to the bottom you can type in a keyword. "PCA" brings up relevant results.

With all of this written down and documented, submit it to the board of hearings at least 10 calendar days in advance as described on the letter you received with the hearing date (after you file for the appeal).

The appeal

Your appeal will likely occur over the phone. They will call you and record the session. A MassHealth representative will attend as well as a hearing officer from the Board of Hearings. The hearing officer is a neutral third-party - they are not a MassHealth employee. The hearing officer will go through each of the ADLs and IADLs individually that were modified or denied from the original request (you won't talk about anything that was approved in full). The MassHealth representative will speak to why they made the denial or modification, and then you will speak as to why you want more time.

The hearing officer may ask clarifying questions or prod the MassHealth representative or you towards a resolution. Hopefully you and the MassHealth representative will agree on each item as you discuss - either leaving the minutes as-is, going up to the amount you requested, or meeting somewhere in the middle. If there is anything that you still disagree with, the hearing officer will provide a written ruling after the appeal call has ended. The written decision will be administered generally within a month or two after the hearing; you can ask when to expect it. The decision will be backdated to when the original MassHealth decision was effective.

Best of luck!

This is a continuation of the MassHealth PCA overview article.

How do you start the process?

To utilize the PCA program, you first need to get in touch with a Personal Care Management (PCM) agency. Here is a link to all of the agencies in Massachusetts. Many of these agencies are not aware that children as young as three can qualify for PCA hours, and will tell you that they will not evaluate you. Keep trying! Parents we know have had luck with the following agencies:

• Northeast Arc of Massachusetts (Note: some staff will evaluate three-year-olds while some others will refuse. Your mileage may vary.)

You can either call the agency directly to self-refer, or you can have your primary care provider send the paperwork to start a referral on your behalf. If you self-refer, the agency will reach out to your provider for you to get the necessary paperwork.

The intake and evaluation process

Once you have gotten a referral to a PCM agency, they will book a meeting (or meetings) for the evaluation. For the evaluation, members of the agency will come into your home and talk to you about you or your child's abilities, their equipment, and what they are and are not able to do independently. Some evaluators are knowledgeable and understanding and will ask you nuanced questions to request the most PCA hours for you, but some do not. It's best to go into the meeting knowing how much work you do for your child on a daily basis - or maybe what you should be doing for your child on a daily basis but don't have the bandwidth for. Things like:

• Stairs in the home making transfers longer than usual
• All of the equipment you use - gait trainer? stander? wheelchair? other chairs?
• All of the prosthetics or other things you wear that take longer to get dressed and undressed
• Incontinence issues - changing diapers, outfits, sheets
• Exercises that need to be done in the home, like stretching
• Medication prep, food prep, and feeding
• Extra work needed for bathing or other personal hygiene

Once you go through the evaluation process, the agency will submit the necessary forms to MassHealth and they will come back with an approval, modification, or denial. You will be approved anywhere from zero to the full number of hours that were requested, which is why you want to have an evaluation with as high a number of hours as you can.

You're in! What's next?

(If you did not get approved, or got approved for fewer hours, check out the next article on appealing.)

Yay, woohoo! You've been approved for PCA hours as soon as you get that approval letter (or even earlier - it should tell you when the date starts). But before you start charging hours, your agency should reach out to you to meet once again to walk you through all the required paperwork with the Fiscal Intermediary, Tempus Unlimited. Tempus manages payroll for your PCAs, even though MassHealth funds the PCA program. You must use Tempus for payroll; there are no other fiscal intermediaries in Massachusetts. There will be some paperwork you have to fill out, and some forms you need to keep on display in your home. The agency will also go over what paperwork needs to be filled out for any PCAs you hire. A PCA cannot be a parent or legal guardian of the member, if the member is a minor, or a spouse, but can be almost anybody else. See this PDF for more details.

You can email the PCA paperwork to Tempus at MAFMS@tempusunlimited.org, or you can mail or fax the forms as well. Give Tempus a few business days to process the paperwork (they're pretty quick!), and then call and confirm that you're all set.

For more information

The Tempus Unlimited website has a BUNCH of handouts and pages with more detailed information on the PCA program and how it works.

Disabled people with MassHealth might qualify for the Personal Care Attendant (PCA) program.

What is the program?

The PCA program allows you to hire someone to come into your home (or within the community) to help with Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs). The PCA is paid by MassHealth to help you. ADLs include things like getting dressed, bathing, personal hygiene, and moving around. IADLs include things like housekeeping, laundry, meal prep, and medical transport.

How is that different from nursing hours?

PCAs can perform a few tasks that overlap with skilled nursing, such as g-tube feeding administration. But for other more medically-focused activities, the MassHealth member would qualify for nursing hours. A member can qualify for both nursing and PCA hours.

Who qualifies?

Disabled people with MassHealth qualify if they are unable to perform ADLs or IADLs that can normally be performed by typically-developing non-disabled people of the same age. A child as young as 3 years of age can qualify for PCA hours, though they generally are approved for fewer hours than an adult. This is because a typical three-year-old cannot perform many ADLs (like changing diapers, for instance, or fully bathing independently) and cannot perform any IADLs, so the parent would already be expected to perform those tasks. As a child ages, they may qualify for more hours as a typical child of that age would be expected to perform more ADLs and IADLs independently.