Post 105: APS Isn’t Meant to be Punitive – How Adult Protective Services Can Help

“The nurse said they would call APS if I didn’t find a caregiver for my mom at night.  They’d call APS for negligence.  I don’t understand why they would do that.  I’m trying my best to take care of her.  I’m here during the day, and she’s just sleeping at night when I work nights.”

As a palliative care physician (read Post 1: What Exactly Does a Palliative Care Specialist Do?), I often hear from family members their struggles while caring for their loved one when their loved one’s health condition is declining to the point that it is affecting multiple areas of everyone’s lives (read Post 96: Bounding to Bedbound – Feeling Frustrated, Sad, and Uncertain as a Loved One Loses Their Strength).

Occasionally, they share how they felt blindsided when Adult Protective Services (APS) was contacted by a professional in the healthcare community.  They may express anger or betrayal, embarrassment or shame, or overwhelm or anxiety.  These emotions may particularly be present when family caregivers feel that they are doing the best that they can with physical caregiving, financial support, and other forms of help and now feel that their best intentions and work are being disregarded and that they themselves are being accused of being “bad caregivers.”

Often, these high emotions are due to misconceptions regarding Adult Protective Services.  Many believe APS is called only for situations in which family members are being accused of bad intentions, who are actively “abusing” or “neglecting.”

APS are state-run government agencies in which the APS caseworker visits the home of an adult person, for whom someone (anyone in the community or a professional such as a doctor, nurse, or social worker) has reported legitimate concerns regarding that person being at high risk of harm or being harmed.  These may be concerns of mistreatment (such as physical abuse), neglect (such as not providing ready access to food), or exploitation (such as taking advantage of someone with dementia for their finances). 

This particular blog post refers to example scenarios in which family caregivers have good intentions and therefore feel shocked upon learning that APS was contacted to investigate their loved one’s well-being and/or living situation.

APS’s priority is ensuring the safety of a vulnerable adult person in the foreseeable future, not necessarily to follow long term (of course, if there is active harm occurring or harm that could occur within minutes to hours, this would likely be a situation to call 911 rather than APS).  Their purpose is not to be punitive and instead to provide urgent help, including and not limited to financial help with utilities, physical caregiving or housing help, and assistance with food scarcity, until the risks to a person’s physical well-being are addressed.

A few examples of APS involvement despite well-intentioned family caregivers include the following:

A mom of two preschool-aged children is told by her father’s primary care physician on the phone that he plans to contact APS for “neglect” if she is unable to bring her father to the office for an annual evaluation.  “He’s had three no show’s or last minute cancellations.”

“I try and I try,” the woman replies, “but he refuses to leave the house.  His dementia is worse.  He’s not just more forgetful but also doesn’t want to do things, like shower, since the last couple strokes.  I can’t physically force him!  And I’m also taking care of two young kids at home.”

A husband of 45 years is informed by his wife’s ER nurse that APS has been contacted because of the numerous bedsores found on his wife’s backside.  His wife had been getting out of bed less and less frequently due to worsening symptoms from aggressive multiple sclerosis.  He feels outraged.  “I would never abuse or neglect my wife!” he exclaims, “She just kept this from me.  I would ask her, ‘Honey, are you okay?  Do you need any help with anything?’ and she’s always told me no, that she’s fine.  Of course, I went by what she told me!  There’s no need to involve APS!”

“I take care of my brother’s finances.  I pay for rent for his apartment.  His social security pays the utilities.  I even got meals delivered for him,” the man said, perplexed.  He looked to be in his 60s.  “I guess the home health therapist or someone from home health contacted APS.  They said his place was a tripping hazard because of all the stuff lying around.  I take care of our parents full time at home.  I can’t go to his place to clean up.  I mean, it’s his place.  He’s always bounced back enough from his cancer treatments to move around his apartment.  I thought he was just taking a little longer to bounce back.” 

Sometimes, family caregivers perceive receiving in an accusatory manner – rather than in a compassionate manner – the reason as to why APS is contacted, resulting in reactions of anger, disbelief, shame, embarrassment, and other negative emotions.  These emotions may make some caregivers less inclined to report in the future increasing concerns and struggles in caring for their loved one.

Ideally, these family caregivers are acknowledged for doing the best they can (read Post 41: Is This Caregiver Burnout? - 20 Signs of Potential Burnout and Post 42: Thirteen Suggestions for Coping with Caregiving and Decreasing Risk of Burnout).  “Often, family members try their best to care for their loved one, who is getting weaker and weaker.  At some point, the amount of day-to-day physical caregiving and assistance can become overwhelming.  Adult Protective Services is sometimes contacted when it seems that the help someone needs at home is outweighing what any one family member can provide.  The point of contacting APS is to try to find help and workable solutions as quickly as possible for the patient and by extension, their family caregivers.”

After APS is contacted and they obtain details such as why there is suspected neglect, self-neglect, abuse, or exploitation, APS determines whether they are able to take on the case (for example, is this an older adult, perhaps with decreased mental capacity or increased vulnerability, and is this person located in their jurisdiction?).  Depending on the level of risk and the urgency of danger, APS will visit and/or call the person - as well as obtain additional information from family, neighbors, and other people who regularly see or make contact with the person – as soon as within a day to several days later (again, 911 instead of APS should be called if immediate help is needed).  After they obtain necessary information, APS may then offer the most appropriate assistance. 

A few examples in which APS has assisted patients and family members include, and are not limited to, the following:

-  facilitating identifying family members and explaining to them the patient’s situation in case family can assist/engage in some way

-  facilitating obtaining a home caregiver/provider, even if temporary, for several hours a day while family attempts to make long term caregiving/living arrangements

-  facilitating transferring the patient to a long term dependent living situation

-  facilitating getting gas/water/electricity utilities restarted

-  facilitating deep cleaning services for someone who has not had the physical ability to clean their place for a long time or facilitating a meal delivery service for someone who no longer has the finances or physical ability to obtain groceries and meal prep

Note, in America, every person who is of sound mind (read Post 10: Four Simple Questions to Determine if a Person is of Sound Mind) has the right to make decisions even if they are making an “unwise,” “unsafe,” or “poor” decision, including the decision to remain in a risky situation. 

For example, a daughter may call APS on herself and her family in an attempt to obtain help in convincing her father that living at home on his own is no longer safe due to his repeated falls.  She may then be told by APS, “Your father is oriented and has mental capacity to make his own decisions. He is able to explain the potential risks of being on his own and potentially falling and states he’d rather take his chances. Since he has decision making capacity, we cannot force him to move to another location with supervision or accept a provider in his house without his consent.”

This daughter may then try to negotiate safer solutions for her father’s living situation via multiple family conversations, meetings with her father’s doctors, and appointments with social workers regarding potential provider caregiver or placement options as covered by his financial resources (read Post 36: A Nursing Home for Dad? – Six Practical Steps to Making a Difficult Decision).  These steps are ideally attempted prior to calling APS.  In this example, these steps may be taken and/or resume after APS signs off on or closes the case.

"APS was contacted" may sound scary and/or evoke strong emotions in someone. Hopefully, this post clarifies some misconceptions - and reduces some of that emotional stress - regarding APS, as well as provide initial (APS and non-APS) steps for family members who may be feeling overwhelmed with caregiving.