“Person-Centered Treatment”: Yes, please!

Ben is getting closer to release from City Hospital – this time. Some of you have asked about the audio excerpt I posted a few days ago – when did that take place? That excerpt is from my book, the incident dated one week prior to Ben’s first admittance in 2003.

This year, 2011, marks Ben’s first hospitalization in over six years, and this post is about the current setback. What’s different now? Mostly this: we’ve had six years of evidence that Ben can thrive in a group home setting, and a devastating one month of evidence that moving him way too quickly into independent living, without

Treatment Advocacy Center, for info and advocacy

appropriate transition “person-centered” services, was not well thought out.  Simply put, the new staff did not take the time to get to know Ben, his needs, and especially how to properly supervise his medication intake. The result? Over one month now, in the hospital. And now, grateful he is starting to respond once again to his meds, we face the next big question: Where will he go once he is discharged, and how to avoid another relapse?

 

They have planned a meeting at the hospital re discharge, and I plan to be there. But, just in case, I drafted a letter to all concerned. Here is part of what I said:

“I want to be perfectly clear about what Ben needs, not just as a patient but as a person – for a successful post-release program.
I am aware, of course, that restrictions exist due to legal and financial restraints over which you may have no control – but as you can see, an ounce of forethought can prevent a very expensive (both financially and emotionally) hospitalization.
First of all, let me state for the record that Ben clearly is not – and was not, at the time of his transfer – ready for independent living of the sort arranged by your agency in May. This should have been clear from his obvious resistance to medication at the time of his intake meeting. A vital part of his recovery process – and the reason he was doing so well in a group home setting – is careful, unwavering supervision of his meds. Even though his success and recovery grew in the past SIX years before his sloppy transfer to the low-income-housing that was arranged, it could only be built upon the foundation of careful supervision of his meds. Even a med nurse is not the answer. It is too easy for Ben to refuse to open the door, pretend he is not home, or to legitimately not be able to be there because of work, school (in the fall he often has evening classes) or the AA/NA meetings he attends. He needs to be accountable to someone for his med compliance- but also have the flexibility to attend the other things that are vital to his recovery such as family events, school classes, NA meetings. This was entirely workable at Harrison House, where – above all – each and every staff member was aware of how closely he had to be supervised while taking his meds.

Now to the rest of his recovery needs, his “Person Centered Treatment.” Ben’s prior success, while based on the foundation of his medical treatment, was based on three other vital elements:
Community – staff that truly knew him and – in most cases – actually cared about him, applauded his achievements, served as parental figures; housemates who, while not his best friends and often less functional, still provided someone to eat with, watch TV with, go to meetings with. At the apartment building that was arranged, he can’t even smoke a cigarette in front of the building. No “loitering.” Isolation is encouraged there. Wrong!!!!! Yes, there are options for socialization, but Ben, as is often the case with mental illness, does not have the self-motivation to go to these places, is apprehensive about the first steps, and finds it easier not to try the unknown. Making an “exercise class” available is not enough.
Purpose – school, chores that help others, groups to attend, feeling needed. In this lonely apartment? He is lost. No one needs him, except at work – and that is not enough, as you saw.
Structure – being home to do chores, a schedule for daily living, requirements for NA/AA meetings etc. – but NOT expected to self-motivate. The negative symptoms of mental illness include a reduced ability to plan a productive day, and to self-motivate. At Harrison House, the requirements – and the fact that others were required to do the same (community, again) – gave Ben the structure within which he could spread his wings to other goals (additional meetings, school, etc) himself.

You have told me there are “no beds” anywhere else. I know there is a long waiting period. I know Ben thinks he is happy in this isolated, roach-infested apartment. Maybe our choices are limited now – but if Ben returns to this apartment without the support he needs, he will be back in the hospital before you blink your eyes. So let’s prevent that.

Person-Centered treatment, penny-wise-pound-foolish budgets, required assisted outpatient services, and support for medication adherence are all hot legislative issues, and I know that in CT you are especially limited by the lack of power they allow for case managers as well as families.

But Ben is a person, and there is still a way to work together, and with him, for the treatment he needs to stay functional, while honoring the fact that those with mental illness don’t always “know what’s good for them”, especially while impaired.”

Thank you.
Randye

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5 thoughts on ““Person-Centered Treatment”: Yes, please!

  1. Glad to hear he is responding to his medication and getting better. I think it is great that you are such an advocate for your son and in doing so model it for other families. Too often we hesitate to speak up and say what we know is best for the health of our loved ones with a brain disorder. I hope they are able to get him to a residential location that will help him back on his road to recovery.
    Take care

  2. Your words and thoughts are stated clearly and let’s hope that with your support it helps Ben as well as others down the line.

  3. Randye, your son is lucky to have you. There are many people like him who do not have family members who can advocate for them, even the limited amount we can do given the privacy laws that work against our efforts.

    I realized that arguement against people being released from the hospital too soon is basically the same argument you have about someone being stepped down from a Group Home too soon, with improper planning, or possibly when they shouldn’t have been moved in the first place. At each step of the way, proper assessment criteria needs to be developed to determine when a person can be stepped-down. Then, proper transition planning needs to be developed, including a way to stop the transition before it happens if, during the preparation, it becomes clear the transition would not be successful. Finally, proper post-transition followup needs to be performed to ensure the transition was successful and a method to reverse the transition needs to be developed if is proves to be unsuccessful.

    I will be told that all of this takes money, but if we look at the costs of the acute in-patient care your son required due to the poor planning or improper move in the first place, I am sure we will identify that for some, the costs are high, in dollars and in human pain and suffering. I am advocating that a study be performed on the costs of the 911 calls, the rides in the ambulance, the frequent ER visits and trips to the local hospital psychiatric ward. How much money is spent by local communities and the states to keep people with severe mental illness in jail and prison instead of in the hospital or in a well supervised group home when that is truly the least restrictive environment they can handle? How much earnings have been lost by loved ones who go to the hospital, court, or prison, over and over again? How many people are suffering on the streets, in prison, or have died all too young?

    I look forward to joining efforts with you to ensure that Person-Centered Treatment means providing the necessary treatment that will enable a person to live in the least restrictive environment based on the person’s capabilities, even if that means stopping at the Group Home level. There must be a way to determine the level of independence a person can handle, besides pushing them one step too far, which happened to your son, my brother and hundreds of thousands of other people who have a severe mental illness.

    Thank you for sharing your story.

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