This story has a mostly happy ending. However, it did not begin that way.
It is a personal story, which begins with the police knocking on my door in Cary, North Carolina late one night in February 2017. I was sleeping and it was around 2 am, but the police forced me to go to a Crisis and Assessment Center in Raleigh, NC.
I questioned why this was happening but the police said they did not know, and that “they were just doing their job.” While I was at UNC WakeBrook, I asked to see the involuntary commitment order that allowed for me to be forced into treatment. The staff refused to show the papers to me.
I was held for 72 hours, given shots of Haldol, and then I was taken by Sheriff Deputies to Central Regional Hospital over an hour’s drive away in Butner, NC, just south of the Virginia border. Upon arrival at CRH I was sent to the Geriatric Unit where those with dementia are held. I was there for one week, and then transferred to the Geriatric Unit next door.
I still was not allowed to see the commitment papers, and I was not allowed to go before a judge to get a legal decision on my commitment for another seven weeks.
Since my lease was ending in a few weeks, and I had no idea how long I would be hospitalized, I decided not to continue renting my apartment. My daughter visited to sign some papers and to clear out my household goods and store them. Vacating the apartment made me “homeless” under some DHHS service definitions, and truly homeless in my own mind.
As I was on the Geriatric Unit for almost two months, I got to know a few of the other patients on the unit and in the therapy groups fairly well. I also learned a lot just by observing activity on the unit. I asked several of the patients on my unit where they lived and how long they had been on this hospital’s unit for elderly patients.
Their answers were disheartening. Most had been there two years or more. One had been at Butner in a former hospital even before CRH was opened many years ago. She told me she had been there at least 12 years.
Another patient told me how he longed to return to his home, but how he had given up hope. He asked me not to say anything he told me, as he feared reprisals from staff. I have described his and other patients’ mental state as “downtrodden,” although I feel sure staff would describe them as “depressed.”
I also learned some of what was going on in the hospital from those with whom I attended groups in art therapy, music therapy, and a writing group. These groups had patients from all units, and I saw them come and go during my stay. The music therapy leader played “Happy Trails to You” on her guitar and sang to patients ready for discharge, as an uplifting send-off.
However, on my own unit, only one person that I can recall was released in the weeks before I and my next door neighbor on the unit were discharged on the same day. She went to a nursing home. I went to a motel.
The various treatment types I received at CRH were both among the best and among the worst in my experience. This was the latest of a long history of inpatient treatment, so I was surprised at the good part that the Recreation Therapy of art and music provided. Also, I was allowed to work in the enclosed courtyards where the plants needed weeding and replanting. Many patients worked a few hours a week for the hospital for minimum wage jobs. These were the good surprises.
However, I am not a “compliant patient,” as I do not accept that forced treatment is the best way to treat any patient—not just myself. Everything I did to try to get released only further antagonized the Geriatric Unit staff and made them dish out more subtle retaliation.
Theoretically at least, I should have gone to court before a County District Court at the hospital within 10 days of my legal commitment. That did not happen until the day before my release from the hospital, when the judge ordered my release against the staff’s medical advice.
Where is the “Person Centered” part of Discharge Planning?
North Carolina’s Department of Health and Human Services staff—in their written suggestions for providers of behavioral healthcare who design treatment plans—have repeatedly and over many years used the words “person-centered” as the basis for mental health treatment. I rarely saw that from my psychiatrist or other staff who exhibited instead a “cookie cutter” mentality to providing care. I raised this issue with my assigned staff to no avail.
My assigned social worker was supposed to follow my wishes, but declined to do so. She instead spoke privately with my adult daughter, who had been given legal Power of Attorney (PoA), often without my knowledge or even against my explicit wishes. My social worker told me I could easily and quickly be released, if I only would cooperate and go to a group home and not insist on returning to the community in an apartment.
I had been receiving monetary help to pay my rent from my brother, whom I had seldom seen or heard from him in years. Yet the staff relied on his advice through my daughter, who felt she should listen to him and not me. She apparently assumed that since I was in the hospital she could make all my medical decisions. This is not what PoA laws state, but what she was told by her uncle, who is also an attorney.
When I had been in the ER for observation at WakeMed Raleigh just before this forced treatment, the doctor ordered my release. My brother told hospital staff that night in the lobby where I could hear that I “was off my meds,” and that as an attorney he could get me committed. He had no idea of my situation, as we had not seen each other in over three months. But who do staff believe? A mental patient or the family member?
In my home state, NAMI rules, and hence family members also rule. We have a high level of hospitalization, yet NAMI NC leadership clamors for more state hospital beds and more mental health units in community hospitals.
Given that I was hospitalized miles from home, I had no visitors except once when my son and my daughter came in for the same weekend. Even though I was a former PAIMI Coordinator for the Protection and Advocacy Agency in North Carolina, Disability Rights NC declined my requests for anyone on their staff to visit and see firsthand my unit and get a copy of my commitment papers for me.
I have learned that it is not only DRNC that refuses to help any clients with Involuntary Commitment issues, but that this is the position of the National Disability Rights Network for all states. I did have some former PAIMI Council members who refused to stop calling and advocating on my behalf. As a result, when there was a suicide at CRH that spring, a DRNC attorney finally visited me during her investigation visit to the hospital. I later asked for and read her notes on the visit which quoted the staff’s evaluations, and which dismissed my complaints completely.
Once my attorney assigned by the Administrative Office of the Courts actually began to assist me (weeks into my incarceration), I learned that the IVC order’s section for “reason for commitment” were completely blank. All that was on the page was a note that read “see attached.” No statement had been attached.
In other words, from the very beginning my forced treatment had no valid legal basis, and all the staff could have and should have been aware of that. I also believe that what my psychiatrist called “mania” was extreme anger, and that staff used my anger against me. I believe my “non-compliance” (or resistance) to my assigned psychiatrist also led to the fiasco that awaited me upon the day of my release.
The Transition to Community Living Initiative (TCLI)
As I said before, there were a few loyal and vocal advocates who were trying to get help for me. One of them served on a board where she became very familiar with the court settlement between the state’s DHHS and the US Dept. of Justice.
Although the lawsuit that led to the settlement was centered on the warehousing of patients in what are called “adult care homes,” the legal agreement led to inclusion of those held in state psychiatric facilities as well. I had known of the lawsuit, but I was not familiar with the complicated details of the state’s program called Transition to Community Living or its potential benefits for those in the program.
The TCLI program relies on the coordination of care between the three state-operated psychiatric facilities and the seven local Managed Care Organizations (MCOs) across the state. The intent of the program is to provide persons who have not been in the community for months or years not only monetary assistance, but social supports in the transition back to community living. Assistance is supposed to begin with an “In-reach Specialist,” often a Peer Support Specialist, who advocates for the patients at the facilities in the MCO’s geographic area.
On paper it is complicated. In the real life of someone who is hospitalized, it is even more complicated. My assigned TCLI in-reach person was not proactive. When asked if she was my advocate or the staff’s advocate, she answered that she was there to advocate for me. It did not seem that way to me.
When staff kept refusing to heed my wishes to find an apartment, and when my psychiatrist supported this by recommending a stay of not less than 90 days, no one at the MCO assisted me. In fact no one in local or state government did, either, despite written pleas to many at DHHS whom I knew personally.
My not having a true advocate precipitated a true crisis for me upon my release, as the staff only gave me my discharge papers in a sealed manila envelope, after we arrived at a motel in Raleigh. I had been told that the hospital techs riding in our van had all my belongings, which I could not have while at the hospital.
As it turned out, my cell phone, my IDs, and my Mastercard were not with my belongings. Instead these were locked in a safe back at CRH. I was dumped at a motel with no ID, no money or method of payment, and not even a cell phone to call friends or family for help. It was late on a Friday afternoon. I threw a fit, but the staff nevertheless drove off and left me there, saying nothing could be done before Monday.
I could write all the details of the next five months of homelessness, but suffice it to say it was a ride down a very bumpy road. Getting any help from the Alliance Managed Care Organization staff or my assigned providers was difficult much of the time—and impossible at other times. I found a long-term stay hotel and used my personal funds (not spent while in the hospital) to pay the weekly rent for two months, then advised the MCO that I could no longer pay for this and I planned to move into one of the few homeless shelters for single women in the city of Raleigh.
Only then did the TCIL staff approve emergency housing funds to pay for my hotel expenses. I could have been in a studio apartment starting in May, but my In-reach Specialist (for reasons never explained) refused me the funds to pay for an apartment application fee and the deposit. I complained to the MCO, and her co-workers said they disagreed with her decision to refuse funds, but by that time, the apartment I had located was rented to someone else.
Some have asked me how I would suggest improving things in NC and at my MCO so as to reduce homelessness among those with mental health diagnoses. First and foremost, I would ask, “Where are the real advocates for more low-income housing?” And where the hell have they been for those who are incarcerated, whether it be in jails and prisons or mental facilities? There is no mental health client group in NC, and there has not been an effective and viable one for many years. NAMI NC claims to be “THE Voice for Mental Illness” in NC. However, it has become just another extension of the state and the DHHS, as it took on contracts with the state to provide services and became dependent on state funding. With that dependence, any semblance of true advocacy went by the wayside.
In my opinion, even feel-good groups like Habitat for Humanity are just fig leaves covering up the lack of truly effective lobbying for money for producing low-income housing. There are a few experiments in low-income housing funded by foundations or private organizations but no statewide policy. After the Republicans took over the General Assembly eight years ago, talk about social improvements such as building more low-income housing falls on deaf ears.
There are some good parts of my story, and they result from a few truly conscientious and proactive Care Coordinators at Alliance MCO. Chief among these was Renee King-Torres. At our first meeting I was hostile. My recent experiences with MCO staff had been very discouraging and frustrating. I let her know I did not expect anything else from her.
She proved me wrong.
In October 2017, I signed a lease for the apartment where I now live. It is a very small apartment in a very large complex. I live in the area of Northeast Raleigh I had chosen, and my complex has many amenities including a pond behind my building. I am able to feed the songbirds and watch the ducks. Just this week three new goslings appeared with their flock. This gave me cause for joy.
Life is good, and this would have been impossible without my TCLI financial assistance and my moving-day assistance from Renee and others from Alliance.
But when will such housing assistance become the rule and not the exception? When will those still behind bars or barbed wire fences—like at CRH—be able to hope for a day on the outside in a home of his or her own?
The answer will not come from me, but only when many others wake up and realize that the patients incarcerated who are “out of sight, out of mind” need help and need strong advocates to promote more community funding for housing and more community supports.