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NIU Health Advocacy Clinic: Empowering Those Experiencing Homelessness and Mental Illness Through Advanced Directives
One Friday morning years ago, “Josh”1 stopped by my office. He was a 56-year-old man who was living in Aurora at Hesed House, the second largest homeless shelter in Illinois. Josh was no stranger to me, as our clinic helped him obtain Social Security benefits the prior year. He could no longer work because he suffered from schizoaffective disorder as well as deep-vein thrombosis and severe asthma. The week before stopping by my office, Josh had attended a presentation about powers of attorney (“POA”) for health care given by law students. He wanted to know if it would be a good idea for him to complete one.
I direct the Northern Illinois University (NIU) College of Law Health Advocacy Clinic. Founded in 2014, the clinic is a medical-legal partnership between NIU College of Law, Aunt Martha’s Health and Outreach Center and Hesed House. In medical-legal partnerships, medical professionals, lawyers, social worker, and other professionals work together to resolve legal needs negatively impacting a client’s health.2 NIU law students spend between 8-16 hours per week on-site at Hesed House working with clients like Josh.
In 2022, 582,462 people experienced homelessness in the U.S.3 In Illinois, 9,212 individuals were homeless on a given night in 2022.4 Additionally, 21.1 percent of people experiencing homelessness in the U.S. have a serious mental health condition.5 When the clinic opened, we wanted to provide services to help this population that has unique legal needs. We started by representing clients with applying for and appealing the denials of public benefits such as Medicaid, Supplemental Nutritional Assistance Program (SNAP) and Social Security SSI/SSDI. Shortly thereafter, one of the residents at Hesed House had a major cardiac attack that left him unconscious. He had no paperwork regarding his medical wishes. After this incident, Health Advocacy Clinic students began assisting Hesed House clients with advanced care planning, primarily completing POAs for health care. POAs are advanced directives that allow a principal to name an agent to make health care decisions if he/she becomes unable to do so himself/herself.6 Agents can make decisions about physical and mental health conditions as well as disposition of remains after principals die.7 POAs do not expire and are in effect unless principals decide to revoke or change them. To spread the word about POAs, clinic students started hosting “Power of Attorney Days” at Hesed House, where they led information sessions about POAs and then helped clients complete them.
Back to Josh. He had three questions for me about POAs, all questions that demonstrate why it is a good idea for homeless clients to complete them.8 First, he asked if it was okay if he named a friend to make decisions for him instead of a family member. His parents were deceased, he was divorced, and he was estranged from his adult daughter. Stories like this are not unusual for many of the homeless clients we work with, as they have lost contact with their families. Josh and I discussed why his situation would make having a POA more important. If no advanced directive exists, the Illinois Health Care Surrogate Act9 designates individuals in a specific order who can make medical decisions for individuals lacking decisional capacity. First, the patient’s guardian of the person; second, the patient’s spouse; next, any adult son or daughter of the patient.10 Josh was confident that one of his friends would be more familiar with his beliefs and more likely to honor his wishes than his daughter who “hates me.” Josh could name his friend as his agent in a POA. The Health Care Surrogacy Act does not apply if a valid POA has been executed,11 so his daughter would not be allowed to make decisions. He seemed content with this explanation.
Josh’s second question surprised me. As background, he was diagnosed with schizoaffective disorder in his early 20s and had been hospitalized “dozens” of times for his symptoms. The frequency Josh’s hospitalizations increased after he became homeless. At the time we talked, he said that things had been going well since he started Seroquel in addition to other medications. He discussed how his life had been a pattern of stability followed by developing side effects from medications. Often, he stopped taking them. Josh felt out of control during these times. I thought his second question was going involve whether he could still sign a power of attorney for health care despite having a mental health diagnosis.12 Instead he asked if he could change his POA even if he was symptomatic. We talked about how the Illinois Power of Attorney Act states that a health care agency may be revoked at any time, without regard to the principal’s mental or physical condition [emphasis added].13 I did tell him that Illinois law had changed to allow individuals to select a 30-day delay after they communicate their intent to change their POA.14 This option could help prevent Josh from changing his POA when symptomatic, a time when he may need it the most. It could also result in having someone making decisions about his health care for 30 days who he no longer trusted or believed would carry out his wishes during a time of crisis. He appreciated both options of revoking it at any time, as well as delayed revocation, and said he would think about which one to select.
Josh’s final question was whether there were any other advanced care planning documents he should complete. Although the law students had not covered it in their POA education sessions, Josh and I discussed declarations for mental health treatment. These are advance directives that address mental health care and provide specific wishes regarding psychotropic medications, electroconvulsive therapy, admission to and retention in facility and selections of physicians.15 An attorney-in-fact can be designated to make decisions for someone. The mental health declaration would allow Josh, who has tried various medications in his lifetime, the opportunity to provide information to his attorney-in-fact about treatment preferences. Josh and I talked about how these documents need to be redone every three years.16 Additionally, revocation of a mental health declaration is different than a POA that can happen at any time without regard for decision making capacity. To revoke a declaration, a physician needs to confirm that someone is capable of giving or withholding consent for mental health treatment.17 Josh asked how many mental health declarations I had helped clients complete, and I was not proud of the answer: none. Many years ago, I attempted to assist a client but quickly became uncomfortable when the client asked my opinion on what medications and dosages should be included in the declaration. It simply was outside my expertise, and it became clear that the best way to complete these would include clients, attorneys, and mental health providers. Perhaps our future “Mental Health Declarations” days could involve all these individuals. This type of collaboration is what makes the medical-legal partnership model so effective.
Ultimately, Josh completed a power of attorney for health care naming his friend as his agent. Before we could complete the mental health declaration, he left Hesed House. If he ever returns, we will be ready to do so. Hopefully, we can help other individuals experiencing homelessness and mental health challenges take control of their health care wishes through advanced directives.
Colleen Boraca is the director of the Northern Illinois University (NIU) College of Law Health Advocacy Clinic. She can be contacted at cboraca@niu.edu.
Thank you to Brittany Malone, a 2023 NIU College of Law graduate, who assisted with the research for this article during her time as a graduate assistant in the Health Advocacy Clinic.
ref1. The client’s real name has been changed to protect confidentiality.
2. For more on the medical-legal partnership model, visit the National Center for Medical-Legal Partnership’s website at Home -- National Center for Medical-Legal Partnership (last visited July 18, 2023).
3. State of Homelessness: 2023 Edition, National Alliance to End Homelessness, found at Homelessness in America (endhomelessness.org) (last visited July 18, 2023).
4. State of Homelessness: State and CoC Dashboards, National Alliance to End Homelessness, found at SOH: State and CoC Dashboards - National Alliance to End Homelessness (last visited July 18, 2023).
5. Mental Health by the Numbers, National Alliance on Mental Illness, found at Mental Health By the Numbers | NAMI: National Alliance on Mental Illness (last visited July 18, 2023).
6. See 755 ILCS 45/4
7. See 755 ILCS 45/4-3
8. While Josh’s questions demonstrated why having advanced directives is important for unhoused individuals, I am a firm believer that everyone should do advanced care planning.
9. See 755 ILCS 40
10. See 755 ILCS 40/25(a)(1)-(3)
11. See 755 ILCS 40/15
12. I am asked this question often. Simply being diagnosed with a mental illness does not prevent someone from being able to sign a POA. There are various factors that are used to assess someone’s capacity. This topic could be its own article, maybe a future one.
13. See 755 ILCS 45/4-6
14. Illinois House Bill 679, effective July 30, 2021 into 755 ILCS 45/4-6
15. See 755 ILCS 43
16. See 755 ILCS 43/10(2)
17. See 755 ILCS 43/50