Human Rights Committee

The DD Waiver program requires that a provider agency have a Human Rights Committee (PDF), also known as HRC, to ensure that a client's human rights are protected when certain care conditions have to be put into place.  For example, if a client requires physical restraint, the use of law enforcement or emergency hospitalization during a crisis, the use of psychotropic medication or protective devices, then the HRC is put into place.  Lyn has an Individual Service Plan (ISP) through the DD Waiver program.  As a result, if any of the conditions listed by the HRC policy come into play, a committee is required to oversee her ISP and the necessary interventions.

Lyn's HRC will hold its first meeting on June 5.  It has been determined by the agency supervising her ISP, that Lyn now needs the oversight of an HRC because of the following three reasons.  First, Lyn's doctor has prescribed a medication that is designed to ease her anxiety and instructed Mom to use it if she cannot redirect Lyn after 10 minutes of attempted redirection.  Second, Mom has started using a baby monitor to keep an ear out on Lyn during the night.  Third, Mom has raised the issue of door alarms if Lyn starts wandering at night.

Lyn was diagnosed with Sundowner's more than 15 years ago.  The primary symptom  of Lyn's Sundowner's is the dramatic increase in anxiety she experiences as night falls if she is out of her own environment.  She knows where she is, but it looks and feels very different to her.  As a result, she starts acting out and rapidly dissolves into tears.  Lyn's doctor has prescribed a medication to help ease her anxiety.  Fundamentally, it is changing her mood.  This places the medication in the psychotropic category.

With the dramatic drop in Lyn's nightly blood oxygen a couple of months ago, Mom picked up a baby monitor and set it up in their bedrooms.  Lyn was turning off her oxygen in the night and taking off the cannula.  Because Lyn was not following directions, Mom feared that she would die during the night.  Her oxygen levels were that low and the oxygen was brought in because of the criticality of the situation. Mom and the doctor finally convinced Lyn to keep the oxygen on and the cannula in place.  The baby monitor may fall into the category of a protective device because it is being used in a protective capacity.  Mom has already been advised that the use of the baby monitor will only be approved if it is one that has only an audio feed.  Monitors with a video feed are not allowed because visual surveillance violates a person's right to privacy.

Finally, Mom has broached the topic of door alarms with Lyn's case manager.  If Lyn starts wandering at night, Mom wants an alarm on an exterior door to be activated so that she can get up and redirect Lyn back to bed.  It would be a violation to lock Lyn into her room at night because this is a method of physical or manual restraint.  Doing so would prevent her from accessing the restroom or food and liquid should she need it.  However, the door alarm would not stop Lyn from leaving.  It would just alert someone that an alarmed door has been opened, allowing Mom to respond directly.

All of these interventions and more will be reviewed by the HRC.  I hope to be able to report back on the HRC's decision.  However, they may direct Mom that their findings are not to be shared with me out of concerns for maintaining confidentiality in Lyn's care.

Comments

  1. Kareninaz (LadyesmeraldaatcoxdotnetMay 23, 2012 at 2:46 AM

    Just curious. Hope you don't mind me asking. I found you from a link on foster parent forums btw. My grandmother has Alzheimers so I can somewhat relate.

    That being said, the question. I can understand your not being able to share the findings HERE if the HRC says no one apart from your mom should know, but I would think you had a right to know as you're on Lyn's care team as well as one of your mom's support people? Can the HRC really tell your mom she has to keep silent? That doesn't seem fair to me.

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  2. Thank you so much for your insightful comment, Kareninaz! You ask a very good question. I don't know how much confidentiality they will request from Mom. I don't know if the HRC will deem the meeting a closed door one in which individuals not present in the room or on the phone may learn of their findings. If they request that I not publish their findings, I will respect it.

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  3. I plan on pushing, if necessary, that the info is not considered confidential. I "think" that I will have a final say. mom

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