Personal Care Services (PCS) are State Medicaid Plan services sometimes known as in-home care or aide services. PCS provides hands-on assistance to people with certain Activities of Daily Living (ADLs).

What are Personal Care Services?

PCS provides assistance to people who need help with certain activities of daily living (ADLs).

Common ADLs that you might need help with:

  • Bathing
  • Dressing
  • Eating
  • Toileting
  • Mobility

For most people, PCS means someone comes to your home to help you a few days a week with things like taking a bath, getting dressed, and fixing meals. PCS services are generally limited to between 80 and 130 hours of services per month. Although a person may need assistance with activities they want to do, Activities of Daily Living (ADL) is a medical term with a specific meaning when it is used to talk about Personal Care Services.

Helping tasks

You might also need help with things like cleaning, laundry, kitchen cleanup, and other tasks. These activities are called “helping tasks” (also known as incidental ADLs, or IADLs). The aide may assist with helping tasks, but they must be related to the five ADLs of bathing, dressing, eating, toileting, and mobility. You cannot receive aide services for the helping tasks unless you first qualify for PCS. In order to qualify for PCS, a person must have Medicaid and need at least limited hands-on assistance with ADLs. A need for cueing or prompting to personally perform a task is not sufficient to qualify for services.

Getting started: How do I apply for personal care services?

Tell your doctor that you need help with your ADLs.  Your doctor will then make a referral for you to get an assessment to determine how much help you need. Eligibility for PCS is determined by an independent assessment conducted by NC Medicaid.  The independent assessment agency will schedule initial assessments and reassessments, send a nurse to your home to perform assessments, determine eligibility and the number of hours you are eligible for, and notify you of the assessment results and other information related to your services.  During COVID, these assessments are done remotely.

You qualify for PCS if you need:

  • Limited hands-on assistance with 3 of the 5 qualifying ADLs
  • Extensive hands-on assistance with at least 1 of the qualifying ADLs and at least limited hands-on assistance with 1 of the 5 qualifying ADLs
  • Fully dependent assistance with at least 1 of the qualifying ADLs and at least limited hands-on assistance with 1 of the 5 qualifying ADLs

Hands-on assistance means that you need someone there with you providing physical help; their hands are helping you in doing the task. This could mean helping you get dressed by helping you pull on your pants or button your shirt. Hands-on assistance with bathing could be that you cannot reach your whole body to bathe or that you need someone to help you get in and out of the shower or tub. Limited, extensive, and fully dependent levels indicate how much assistance you need—either a little, some, or a lot—and this determines the number of hours of PCS you get per month.

The independent assessment – What it is and why it is important

The Assessment (to determine if you are eligible for PCS and how many hours you will get each month) is conducted by a nurse who comes to your home and asks questions about what kind of help you need and asks you to demonstrate how you do things around your house.  These questions and demonstrations are used to figure out whether or not you qualify for PCS and how many hours of PCS you need.

When the assessor calls to schedule the assessment, make sure you clearly tell the person scheduling the assessment if you want your friend or family member there. They will try to schedule the assessment when that person is available. If you want a friend or family member present at the assessment, get some dates/times from them when they are available and ask that the assessment be scheduled for one of those times. You can also give the scheduler permission to contact your friend or family member directly to coordinate a time for the assessment.

What should I do during the assessment?

At the beginning of the assessment you should tell the nurse whether or not you are having a typical day or not as to your ability to do things on your own. Be very clear to explain if you cannot usually do something the nurse asks or if that activity causes you pain or discomfort. Just like at your doctor’s office, you need to tell the nurse what daily life is like for you. Don’t confuse what you used to be able to do without help with what you can do without help now.

Be HONEST! Sometimes answering the nurse’s questions may be embarrassing, but it is important to be open and honest about your daily life. For example, if you cannot always make it to the bathroom in time, you need to let the nurse know because assistance with toileting is one of the five things they assess and may mean the difference in you qualifying for services.

Make sure to focus on the activities that you need help with relating to the 5 ADLs: bathing, eating, dressing, toileting and mobility. For example, do you need help with having someone steady you as you move from room to room? Do you have trouble cooking meals because you cannot stand at the stove for a long time, move pots, or carry dishes to the table?

What if a family member or friend helps me during the week?

If a family member or friend sometimes helps you, this can affect your eligibility or the number of hours you qualify for. If you need help with something, but are getting assistance with that task from someone else who is “willing and able” to do so seven days a week, PCS will not provide an aide to help you. For example, if your daughter is currently helping you bathe and wash your hair and is willing and able to continue to do so whenever you need it, this could mean you will not qualify for PCS at all – or if you do qualify, you would not be provided any hours for bathing.

However, it may be that your daughter is only doing so because no one else is able to and she cannot or doesn’t want to continue to do so (maybe she works outside the home). If that is the case, your daughter isn’t really “willing and able” to help you with the task all the days you need help. You should tell the assessor that, although she helps you bathe, she cannot continue to do so or is not willing to do so. If someone is currently helping you, but cannot continue to do so or is unwilling to do so, you need to be clear about this when the nurse asks.

What Determines How Much Assistance I Can Receive?

  • Requiring Limited Hands-On Assistance: The individual is able to do more than 50 percent of the activity and requires hands-on assistance to complete the rest of the activity.
  • Requiring Extensive Hands-on Assistance: The individual is able to do less than 50 percent of the activity and requires hands-on assistance to complete the remainder of the activity.
  • Totally Dependent: The individual is unable to perform any of the activity and is totally dependent on another to complete the activity.

It may also have been determined that you don’t need any help at all:

  • Totally Independent: The individual is able to self-perform 100 percent of the activity without supervision or assistance.
  • Requiring Cueing or Supervision Only: The individual is able to perform 100 percent of the activity, but requires supervision/verbal cues, monitoring, or assistance retrieving or setting up supplies or equipment.

What Happens After the Assessment?

The nurse will not tell you at the assessment whether or not you qualify for PCS. You should receive a letter from the assessment agency soon after the assessment, telling you that you are either approved for a certain number of hours or that you have been denied. The letter should tell you how your ability to do the five ADLs was assessed and how many days a week you need help with each ADL.

When you look at your assessment, you will want to compare how you were assessed with what your needs actually are. Does the assessment say you only need supervision, but you really need limited or extensive hands-on assistance? If you believe the information in the assessment is incorrect, you will need to appeal the assessment.  Appeals are covered later in this fact sheet.  The differences between the assessment and the reality of your day-to-day life are the basis for your appeal. For each ADL, you will have to explain why you believe the Assessor was wrong in their assessment of your needs.

  • Example: The assessment notes that I do not need help with dressing because I can pull on my sweatpants or nightgown. However, I have difficulty using zippers, buttons, and snaps because of my arthritis. This means that I do need hands-on assistance with dressing.

How is the Number of Hours I Can Receive Determined?

The number of hours you will receive is calculated based on the assistance levels you demonstrated during the assessment. The maximum number of authorized PCS hours is 80 hours per month for adults (21 years and older) or 60 hours per month for children under 21 years old unless the child’s need for additional hours is approved under EPSDT[1]. A person may be eligible for up to 130 hours (up to 50 additional hours) if certain conditions are met[2].

Daily minutes for qualifying ADLs

The following chart shows how minutes are assigned for qualifying ADLs and IADLs based on the level of assistance required:

ADL Limited Assistance  Extensive Assistance Full Dependence
Bathing 35 50 60
Dressing 20 35 40
Mobility 10 20 20
Toileting 25 30 35
Eating 30 45 50

Medication Assistance

Reminders/set-up/supervision Routine administration 8 or Fewer Routine administration plus PRN Poly pharmacy and/or complex
10 minutes/day 20 minutes/day 40 minutes/day 60 minutes/day
  • Example: Ms. Betty needs limited assistance with dressing, eating, toileting, and bathing 7 days a week and needs help with eating 5 days a week (her daughter fixes her meals on the weekends). Ms. Betty’s calculation of hours would be:
    • Limited assistance with dressing: 20 minutes x 7 days per week x 4 weeks/month=140
    • Limited assistance with bathing: 35 minutes x 7 days per week x 4 weeks/month=980
    • Limited assistance with toileting: 25 minutes x 7 days per week x 4 weeks/month=700
    • Limited assistance with eating: 30 minutes x 5 days per week x 4 weeks/month=600

Total: 140 + 980 + 700 + 600= 2420 minutes/60 minutes per day = 40 hours/month

What if I’m receiving hours but think I need more?

If you are receiving PCS, but think you need more hours to complete your ADLs, you should discuss this with the provider agency (the company that employs your aide) and then decide if it is in your best interest to request more hours.

Once you decide to request more hours, ask your provider agency to submit a change of status request for you. The provider agency will need to know what has changed about your ability to accomplish your ADLs since your last assessment and what tasks you need help with that your aide currently is not doing for you. For example, previously your daughter was able to cook twice a week, but now she isn’t able to do so. Your provider would submit a change of status and explain the situation.

Another example would be if you have increased pain or decreased stamina that affects your ability to perform your ADLs or changes how much help you need. Generally, a new assessment is necessary when you request more hours.

Please be aware that if you have a reassessment, although you could be awarded more hours, it is also possible that the Assessment Agency will decide that you need fewer hours than you currently receive or are not eligible for PCS at all. Any such decision can be appealed.

When You Can Get Additional Hours:

1.    Exacerbating Symptoms and Environmental Conditions: If a person has conditions or symptoms that exacerbate or interfere with their ability to perform tasks, up to 25 percent more time may be authorized.

  • Example:  Ms. Betty has a physical disability that causes her to have little ability to move her arms. This disability makes dressing, bathing, and eating particularly difficult and it takes more than the usual time to accomplish these 3 ADLs. Therefore, she may qualify for an additional 25% of time for each of the ADLs affected. This means that her 2.25 hours per month for dressing would be multiplied by 25% to get 2.75 hours per month; her 16.25 hours per month for bathing would be multiplied by 25% to get 20.25 hours per month; and her 10 hours per month for eating would be multiplied by 25% to get 12.5 hours per month. This additional time would increase her total monthly assistance to 47 hours. The maximum amount of additional time Ms. Betty could receive for all conditions and ADLs would be 10      hours per month (40 x 25% = 10 additional hours).

2.   Memory Care and Supervision: A person may qualify for up to 50 additional hours, making the maximum total of hours allowed 130 per month. In order for a beneficiary to qualify for more than 80 hours per month, a physician must attest that all of the following conditions are met:

  • Beneficiary requires an increased level of supervision;
  • Beneficiary requires caregivers with training or experience in caring for individuals who have a degenerative disease, characterized by irreversible memory dysfunction, that attacks the brain and results in impaired memory, thinking, and behavior, including gradual memory loss, impaired judgment, disorientation, personality change, difficulty in learning, and the loss of language skills;
  • Beneficiary requires a physical environment that includes modifications and safety measures to safeguard the individual because of gradual memory loss, impaired judgment, disorientation, personality change, difficulty in learning, and the loss of language skills; and
  • Beneficiary has a history of safety concerns related to inappropriate wandering, ingestion, aggressive behavior, and an increased incidence of falls.

The number of exacerbating conditions determines the possible number of additional hours. For example, if one exacerbating condition is present, up to 10 additional hours per month may be approved. If there are two exacerbating conditions, the person may have up to 20 more hours per month and this pattern continues up to five or more exacerbating conditions leading to up to 50 additional hours per month.

  • Example: Now Ms. Betty needs assistance related to her diagnosis of dementia. She needs an increased level of supervision due to a history of increased incidence of falls and inappropriate wandering. Ms. Betty could be approved for up to an additional 20 hours per month (because she has two exacerbating conditions). To get this additional 20 hours, Ms. Betty’s doctor would have to fill out the physician attestation form and her assessment would have to support the additional hours.

3.   Kids under 21 can sometimes get additional hours through Medicaid under EPSDT.

Appealing a denial of PCS hours or eligibility

What Can I Do if I am Denied PCS Hours?

If you are denied PCS hours and disagree with the assessment of your ability to do the five ADLs of bathing, dressing, eating, toileting and mobility, follow the instructions on the denial letter about filing an appeal. This should involve filling out a form and sending it to the N.C. Office of Administrative Hearings. The letter that reduced or denied your services should come with a Hearing Request Form. This Hearing Request Form must be submitted to the Office of Administrative Hearings (OAH) and DHHS within 30 days from the date on the denial letter, or you will lose your right to appeal. If you do not appeal, your services will be reduced or end on the date stated in the letter. If you already have the services in question and would like to keep them during the appeal process, you need to submit your appeal within 10 days of the date on the letter. Otherwise you may have a gap in your services. You are not entitled to services pending the appeal if the denial is from an initial request for services. If you do not get an appeal form with your letter, you should call the independent assessment agency.

Medicaid appeals are intended to allow a person to appeal a denial or reduction of a service with or without an attorney. Although an attorney can be helpful, people are often successful in Medicaid appeals on their own or with the help of a trusted relative or friend. Your provider also may be willing to assist you.

Keys to a successful appeal

  • Know your rights
  • Be organized
  • Present information that shows your medical need and explains why you qualify for Personal Care Services.

Two steps to the appeal: Mediation and Hearing

Mediation

Before you get to a hearing you will have an opportunity to discuss your need for in-home aide services through mediation. This is an informal, non-binding process in which both parties are guided through a discussion by a neutral, third-party mediator to see if they can reach an agreement.

Hearing

If mediation does not resolve the issue, the next step is a hearing at the Office of Administrative Hearings (OAH) before an Administrative Law Judge. The hearing involves presenting evidence, including introducing documents and witness testimony, and making arguments to the Judge.

Step-by-Step Instructions

Step #1: Filing the “Hearing Request” Form.

The Hearing Request Form is enclosed with the letter informing you of your denial.

  • Instructions on how to file this form are on the form itself. The form must be returned by mail or by fax to the Office of Administrative Hearings and DHHS to appeal the termination of your services.
  • Most hearings will be done over the telephone. However, you can request an in-person hearing. If you request an in-person hearing, it will be held in Raleigh unless you request that the hearing be held closer to your county of residence for a good reason – such as your disability prevents you from traveling to Raleigh.
  • The letter you received says that you may be required to pay for the services that continue during the appeal process. While this is possible if you ultimately lose at a hearing, it does not generally occur.

Step #2: Preparing for Mediation

Within 25 days of filing your appeal, you will be contacted by a mediator to schedule a time for the mediation, which will take place in a telephone conference call.

If you agree to participate in mediation, but fail to attend mediation without good cause, the Office of Administrative Hearings will dismiss your case.

Who is Involved in Mediation

If you are not represented by an attorney, the parties at the mediation will be a neutral, third-party mediator, yourself, and a representative from the Independent Assessment Agency. Your doctor, nurse, aide, case manager or family member may also participate in the mediation to explain your need for the services. If you choose to have an attorney represent you, your attorney and an Assistant Attorney General representing DHHS will also be present at the mediation.

Tips for mediation

  • Request DocumentsYou are entitled to see the information that was used by the Independent Assessment Agency when it made its decision to deny or reduce your services. You can request a copy of your entire case file, including your most recent assessment, by contacting the Assistant Attorney General assigned to your case in the NC Department of Justice, Division of Health and Public Assistance at 919-716-6855.
    • We suggest you look at your file before the mediation so that you understand the reasons for the denial.  Sometimes, the Independent Assessment Agency denies services because it misunderstands the information you provided at the Assessment about the amount of help you really need.
    • If you have been receiving services, your provider agency should also have a copy of your most recent assessment and you can request a copy from them. Your provider may also be willing to help explain the assessment to you.
  • Gather DocumentsOrganize any information or records you have documenting your need for Personal Care Services. Your provider is required to create a plan for your care, and you should be able to use this plan to help show why all of the requested hours are necessary.
  • Share Documents If you have documents, such as a letter from your doctor, that you would like the Independent Assessment Agency to consider before mediation to help your discussions, you can provide a copy to the mediator, who will give it to the Independent Assessment Agency representative.
  • Remember: The type of documents that you should share are those that show you need hands-on assistance with your activities of daily living (ADLs) of bathing, dressing, toileting, mobility, and eating.
  • WitnessesYour aide and your doctor are probably the best witnesses concerning your need for Personal Care Services. They can provide a letter explaining why you need services, or they can participate by phone at the mediation.
  • Have a Number of Hours in Mind Be ready to explain what would happen if you lose your services. The Independent Assessment Agency may offer to do a new assessment, or may offer you fewer hours than you requested. Think about the number of hours that you feel would allow you to continue living independently. If you can accept fewer hours and still maintain your independence, you may be able to resolve the case at mediation and avoid a hearing.

Step#3: The Mediation

Mediation is a voluntary and confidential process. There is no penalty if you do not reach agreement during mediation. There are advantages to mediation, including settling the issue or gaining a better understanding of the reasoning behind the decision to terminate or reduce/not increase services prior to a hearing. There is nothing to lose at mediation. If you do not settle at mediation, you will go on to a hearing at the Office of Administrative Hearings. The information you gather during mediation can be used to make better arguments during the hearing.

Step #4: The Hearing

If you did not settle your case at mediation, the next step will be a hearing at the Office of Administrative Hearings. Like mediation, you will be able to present evidence and witness testimony at the hearing.

Who is Involved at Hearing

The parties at the hearing will be an Administrative Law Judge, yourself, and a representative from the Independent Assessment Agency. In addition, an Assistant Attorney General will represent DHHS.

  • EvidenceAny evidence in support of your case, such as a letter from your doctor or the plan of care from your provider, should be submitted to the Office of Administrative Hearings and the Assistant Attorney General assigned to your case at least 5 business days prior to the hearing. However, you may submit documentation of your need for services on the day of your hearing, even if you did not submit it in advance.
  • WitnessesYour doctor, nurse, aide, family members, or anyone else who can testify to your need for Personal Care Services can be a witness.
    • Witnesses can testify by phone if they are not available to attend the hearing in person (that is – if you requested an in-person hearing – most hearings are held by phone anyway). You need to provide the Office of Administrative Hearings with contact information for witnesses who will testify by phone.
    • You should check with your witnesses to make sure they are available the date of your hearing. If they are not, this may be “good cause” for requesting that the hearing be scheduled for a time when the witnesses are available.
  • Administrative Law Judge’s Decision – The Administrative Law Judge will decide if you should have the services you requested or if the denial will remain in force.
  • Appealing the Decision – If you disagree with the Administrative Law Judge’s decision, you can appeal to Superior Court within 30 days from the date of the decision. This is done by filing a Petition for Judicial Review in the Superior Court in the county where you reside or Wake County Superior Court. If you decide to appeal your case to Superior Court, you should contact an attorney to assist you with this process.

If you have been denied PCS and are appealing the decision, you can contact Disability Rights NC at (877) 235-4210 with questions you may have. Although Disability Rights NC cannot offer representation, we will try to answer your questions so that you can better advocate for yourself in the appeals process.

Endnotes

[1] EPSDT is an acronym that refers to Early Periodic Screening, Diagnosis, and Treatment, which is a Medicaid benefit for children that requires the State to provide comprehensive and preventive health care for children enrolled in Medicaid. In practice, it allows a child to receive services above a policy limit if medically necessary. Children may have additional tasks such as ongoing supervision or monitoring covered under EPSDT that are not covered for adults.

[2] The number of hours a person can receive is explained in the NC Medicaid Clinical Coverage Policy 3L for Personal Care Services, which is available at https://medicaid.ncdhhs.gov/3l/open