Theresa's Law is one family's quest for 'justice through change' after their mother's terrible ordeal in an Adult Foster Care (AFC) facility through a proposed set of updates to Michigan's Public Act 218, which governs AFC facilities. These overdue changes are aimed at improving the quality of life for seniors and provide Direct Care Workers (DCW) with the necessary education and skills to be successful in providing exemplary, compassionate care. Theresa's Law specifically addresses deficiencies in: DCW education requirements, oversight and enforcement of regulations, appropriate staffing standards, transparency of Resident Rights, and accountability of AFC facilities.
Our Mother's Experience
Our mother's time in the particular AFC facility she resided in was short, only one month, but it was long enough for us to realize there were serious problems. It was glaringly obvious to us that the facility did not sufficiently train and educate their staff in order for them to understand and properly care for the physical and emotional needs of the population they were hired to serve. Their behaviors were inappropriate, abusive, disrespectful, and showed a lack of concern, empathy, and discernment for our mother when she was at her most vulnerable. The staff was unskilled in proper medication administration, joked about residents dying, and most egregiously, bullied our mom by refusing her request to eat in her room (violating her resident rights) and forcing her to be transported to the main dining room after she was seriously injured the night before from a fall out of bed, which took her life one week later.
When asked to eat in her room because she was in so much pain, the staff told our mom, "We eat lunch and dinner in the dining room here!" and forced our mom to go to the dining room if she wanted to eat. It is important to know that our mom was unable to walk on her own at this point due to her injuries and pain sustained from the fall, which the staff was fully aware of; the pain was so severe, it hurt her upon inspiration and they had to start her on morphine that same day. She also had numerous falls in the past that they were also aware of. We cannot imagine the pain inflicted upon our mother, resulting from the staff's willful actions of abuse and cruelty, by having to pull/lift her out of her chair and into a wheelchair to transport her down to the main dining area and then repeated again to get her settled back into her room. Not only did this inflict unnecessary physical pain and emotional distress on our mom, but also it surely exacerbated her injuries. And all because of the staff's incompetence to assess the situation with a shred of common sense and compassion to simply bring a meal to an injured 91 year old as requested. This scenario went on for two days until she became bedridden.
We spoke to our mom later that evening by phone after this incident of cruelty. She was so distressed and angry that they had bullied and humiliated her, she would not allow us to call them to get her ready for bed. She did not want them touching her (a sign of abuse, physical and/or emotional). When we asked her how she would get to the bathroom, she said she would go in her pants if she had to and would sleep in her recliner that night. She rapidly declined and died one week later to the day. Our family is sickened, angry, and heartbroken that our mom's last week of life was filled with emotional and physical distress caused by the very people she was paying handsomely to protect and care for her.
There were many other adverse issues our mother and our family experienced, both during her stay and after her passing, that are not detailed here, but are addressed in the Theresa's Law proposal. Based on our experience, the general overall culture seemed to be one of blatant lack of respect and dignity for the residents' person-hood. Staff members were cold and gruff in their interactions, often talking down to the residents treating them like children and as if they were the "boss" over them. They also failed to recognize and respect the fact that the AFC room/apartment was the resident's home - not a hospital ward. One example of this occurred within the first week of our mother moving into the facility. Our mother, her hospice nurse, and one of her daughters were standing in her bedroom and bathroom area talking, discussing her care when we heard someone vacuuming down the hall. They proceeded right into our mother's apartment without knocking or asking if this was a good time, and continued to vacuum right around the three of them as they were talking, never saying a word or excusing themself. This was such a lack of respect. The AFC facility most definitely failed to provide an environment that promoted the maintenance or enhancement of each resident's quality of life and personal dignity.
The Complaint Process
After our mom passed away, we filed a complaint with the Michigan's Department of Licensing and Regulatory Affairs (LARA) and to our frustration, even though the AFC facility was cited for two violations, they were never held accountable and no notable change was made. Not only could LARA not assess a financial penalty for the cited violations due to the restrictions of Public Act 218, the AFC facility submitted an insubstantial Corrective Action Plan (CAP) which they did not fully comply with and which LARA never followed up on even after we brought the non-compliance to their attention. We were told by LARA that this was not for us to follow up with and that there were no set standards for when they had to follow up on the CAP; it could be as late as the next licensing renewal period (two years!).
There were secondary investigations into the AFC facility that resulted from the initial complaint we had filed with LARA, and even though we believed ample evidence existed to prove violations clearly existed, each time we were told AFCs are not held to the same standards as nursing homes (which are federally regulated). As a result, they concluded 'no wrong doing'. This did not make sense to us as the same level of care should apply to all seniors across the board, regardless of the designation of the building they resided in. For example, we observed staff at our mother's AFC facility come into her room to give our mom her evening Novolog insulin shot one hour before dinner was to be served. All her Novolog injections were prescribed to be given with meals; this shot being with her dinner (5pm). We could visibly see our mother's glucose levels were rapidly dropping as her eyes became glazed, her face reddened, and she started to drift off. We quickly gave her some snacks to eat that we had brought to her for her birthday and we told the staff member that she cannot be given her shot this early before eating as the insulin is fast acting. The staff member said she didn't realize and would make sure it was given in the future with something to eat if it could not be given right at meal time.
However, the LARA investigation into this revealed they had indeed given our mother her Novolog injection well over 30 minutes before eating on multiple occasions (several between 45mins-1hour before). Despite this, rather than cite them for a violation, LARA accepted the AFC facilities many excuses for why they 'did nothing wrong'. First the AFC facility said they didn't keep records of when a resident ate, so they had no way of knowing if she received her shot with meals. After their own records proved our mom ate at regularly scheduled meal times, the AFC then stated that they adhere to the Michigan Department of Health and Human Services (MDHHS) standards that Non-Critical medications can be administered within 1 hour of prescribed time. We informed LARA that Novolog is a Time-Critical medication, which MDHHS confirmed through a FOIA (Freedom of Information Act) request, and thereby the standard for administration is within 30 minutes of prescribed time, which the AFC clearly violated. But then LARA said that the very policy the AFC facility used to justify no wrongdoing, and that they accepted as valid, couldn't be applied to the AFC because that is a regulation only for hospitals and facilities regulated by MDHHS, which AFC facilities are not as they are regulated by LARA under the rules of Public Act 218. And so, LARA said they could not be held to the same standards. This seemed ludicrous to us as fast-acting insulin is just that, "fast acting" regardless of the building a senior resides in. The fact that the same standards do not apply across all types of facilities and that a grave deviation in medication standards such as this are allowed by the State of Michigan is inexcusable!
Unfortunately, the current landscape allows for these distinctions resulting in a broken system where the seniors are the ones who suffer. Several members of LARA shared our frustration as they stated their hands were tied due to the restrictions of Public Act 218, which we were told contains the "bare bones" minimum requirements and hasn't been updated in over 25 years. One of the State's Long-term Care Ombudsman expressed that they tried to make changes in the past, but they received push back from the industry. This is not surprising as the industry is financially driven!
We wrote numerous follow-up letters to LARA, the Michigan Department of Health and Human Services (MDHHS), and to the AFC facility where our mother resided, all to no avail. We never received a response from MDHHS and not one word from the AFC facility to express any sense of remorse for how our mother was treated. It appeared to us that no one was taking the violations perpetrated against our mother seriously. It seems the only one who has paid a price for the inexcusable, irresponsible, and abusive actions of the AFC facility, is our precious mother.
During our arduous journey to get justice for our mother and understand why the system that was supposed to protect her had repeatedly failed her miserably, we uncovered numerous omissions we believe are significant and should be included in Public Act 218, all of which can be viewed by clicking the link, 'Details of Theresa's Law', at the top of this page. Below are just two comparative examples of where the State of Michigan is failing to prioritize the safety and care of our seniors living in AFC facilities.
Shockingly, the State of Michigan does not mandate any educational courses for DCWs, yet for other positions that have significantly less of a direct impact on the quality of life and care of their patrons, fairly significant requirements are mandated from a licensed school or college, such as:
- Barber - 1,800 hours AND must pass a practical & theory exam
- Cosmetologist - 1,500 hours AND must pass a practical & theory exam
- Beautician - 400 hours
- Manicurist - 400 hours AND must pass practical & theory exam
- Massage Therapist - 625 hours
- Animal Control Officer - 100 instructional hours AND potential additional hours after review by Michigan Department of Agriculture & Rural Development (MDARD)
- DCWs in AFC facilities - ZERO HOURS (the facility our mom resided required only 4 days of on-the-job training)
Also, the only punitive measure available to assess to AFC facilities is to 1.) submit a Corrective Action Plan (CAP), which is proven to be non-effective, 2.) suspend AFC license, 3.) revoke AFC license. Through conversations with LARA, the last two are discouraged if at all possible and CAPs may or may not be enforced and even members of LARA indicated are often futile, which was definitely our experience. Comparatively, MDARD, through Penal Code Act 328, does assess financial penalties for abuse and/or neglect of animals AND it is considered a crime. Please know, we are animal lovers, so we support this (and actually think it probably doesn't go far enough), but what message are we sending to our seniors? Excerpt from Michigan Penal Code 328 of 1931, Sec. 50.(1) As used in this section and section 50b:
- (h) "Neglect" means to fail to sufficiently and properly care for an animal to the extent that the animal's health is jeopardized.
- (2) An owner, possessor, breeder, operator of a pet shop, or person having the charge or custody of an animal shall not do any of the following (emphasis added, mine):
- (a) Fail to provide animal with adequate care
- (f) Negligently allow any animal, including one who is aged, diseased, maimed, hopelessly sick, disabled, or non-ambulatory to suffer unnecessary neglect, torture, or pain.
- (4) A person who violates subsection (2) is guilty of a crime as follows:
- (a) Except as otherwise provided in subsection (c) to (f), if the violation involved 1 animal, the person is guilty of a misdemeanor punishable by 1 or more of the following and may be ordered to pay the costs of prosecution:
- (i) Imprisonment for not more than 93 days
- (ii) A fine of not more than $1,000
- (iii) Community service for not more than 200 hours....
We Must Do Better!We must do better by our precious seniors. We cannot in good conscious sit idly by and accept the status quo, thereby continuing to subject countless seniors to needless pain and suffering. We must demand that those in a position of authority right this wrong and take action to support and enact Theresa's Law. Sadly, it is too late for our mom, but it is not too late to save other seniors from suffering the same indignity, abuse, and substandard care she unfortunately endured. Please don't let our mother's suffering be in vain. Help us honor her memory and of all those who suffered the same fate that went unreported by showing your support for Theresa's Law through signing the letter under, 'Take Action', at the top of this page. After all, one day we will all come to the point in our lives where we will need help with our personal care and needs and our mother's experience could sadly be ours. We pray it is not.
Please keep scrolling to learn a little more about our beloved mother and see the photos of a few of our precious memories of her. (and then click on the link to sign the letter. :-) )