By Michael Clausen, CQL Director of Personal Outcomes
Sometimes, it is necessary to limit a person’s rights in order to provide for their health and safety. When rights are being modified or taken away, it is important that due process is provided. Effective due process relies on the objectivity and perspective of Human Rights Committee Members, a significant number of whom are not beholden to or directly employed by the organization. This perspective allows committees to challenge organizations to uphold people’s rights even when it may be difficult to do so.
First and foremost, committee members should approach each restriction with a focus on maximizing what rights people are able to exercise. People receiving supports have the same rights as everyone else, and these rights can never be taken away arbitrarily. All people have the right to make choices, even when these choices are not consistent with what organizations or family members might want for the person.
Effective due process relies on committee members asking the right questions about proposed restrictions. If these questions cannot be answered, then additional assessment, exploration, or support may be needed. The following list of questions serve as a guide for committee members to engage in productive conversations and explore how people can be supported in the least restrictive and most constructive way possible.
What is the impact on the person’s overall quality of life?
Restrictions often limit the person’s ability to move freely, communicate, and access food and personal possessions. While restrictions may sometimes be needed in order to provide for health or safety, a holistic approach should be utilized when determining whether or not to approve certain restrictions. How does this restriction affect the person’s ability to be independent, have relationships, or be productive? What tools will be utilized to measure the person’s overall quality of life?
What is the purpose of this restriction and how will it be implemented?
The purpose of the restriction should be clearly defined based on a specific, assessed need that is supported by data. Restrictions should never be vague, general, or imposed for the convenience of staff or the organization. Clear parameters should be included to ensure that restrictions are imposed in the way that they were intended.
How do we know that this is the least restrictive approach?
Committees should explore the less-restrictive measures that have been attempted prior to the implementation of this restriction, and the outcome of these less-restrictive approaches should be clearly documented. Additionally, it is important to ask what alternative approaches have been tried.
What is the person trying to communicate?
All behavior is communication. Efforts must be made to determine what the person is trying to communicate prior to the implementation of any restriction. Committees should explore what teaching strategies, augmentative communication, or assistive technologies are being utilized to support the person to communicate prior to the approval of any restriction.
How have medical, mental health, personal, or environmental factors been ruled out prior to the implementation of this restriction?
Perhaps the person’s behavior is an indication that they are feeling some type of medical or mental health distress. Could the behavior be a response to another person or stimulus within the environment? If a restriction is being suggested or imposed by a medical provider, has the person had the opportunity to seek out a second opinion? All of these factors must be considered, and support provided prior to imposing any restrictions upon the person.
What is the criteria for restoring the person’s rights and eliminating this restriction?
Criteria for eliminating restrictions and restoring rights should be documented in a way that is clear, concrete, and understandable. These criteria should be fair and achievable, never vague or generic. The person should be supported to understand what will be done to assist them in this process and what they need to do in order for the restriction to be lifted. Teaching strategies should be implemented in order to support the person to reach the rights restoration criteria.
What is the time limit for this restriction and when will it be reassessed?
No restriction should ever be permanent. All restrictions should contain clearly defined time limits. Restrictions should be reviewed at least annually, and more restrictive measures should be reviewed more frequently.
How are those implementing this restriction being trained and supported?
The perspective of staff members and others supporting the person should be heard, validated, and considered. Those responsible for implementing restrictions should be trained with clear parameters around how this restriction can and cannot be utilized. Rights limitations should be implemented in the least restrictive way possible. Training should include how to uphold a person’s rights while restrictions are being imposed. A process must be in place to monitor how this rights limitation is being implemented to ensure it is not being imposed in a way that is overly restrictive.
How has the person been involved in the process?
How does the person feel about this restriction? What strategies would they suggest? Has the person had the opportunity to attend this meeting and be represented within this process? What steps have been taken to accommodate their participation? Has the person provided informed consent? If so, how was the person educated in order to make this informed decision? What are the alternatives to this restriction?
How does this restriction affect other people using or living in the same environment?
Restrictions such as locked items, buzzers, alarms, and monitoring devices will have an impact on other people using the same environment. This factor should be a primary consideration when deciding whether or not to approve a certain restriction. If restrictions being imposed affect other people, then what efforts are being made to mitigate this effect and how is their informed consent being sought?
What dangers or possible consequences does this restriction present?
Committees should explore whether the benefits of this restriction outweigh the consequences. Is there documentation available that shows the risks of the behavior vs. the risks of the proposed restriction?
The Impact Of Fair Treatment On Quality Of Life
By Carli Friedman, Ph.D., CQL Director of Research
As part of the People are Treated Fairly indicator of the Personal Outcome Measures®, it is determined if fair treatment issues were addressed so the person’s concerns were resolved to their satisfaction. Our research indicates that when fair treatment issues are resolved to the person’s satisfaction, people have a significantly higher quality of life. When fair treatment issues were resolved to the person’s satisfaction they had 12.4 outcomes present (out of 21; 58.9%) versus 7.1 outcomes present (out of 21; 34.0%) when issues are not resolved to their satisfaction.
In fact, fair treatment issues being resolved to the person’s satisfaction is associated with positive improvements in every single area of quality of life (see figures below). For example, when fair treatment issues were resolved to the person’s satisfaction, they more frequently chose their goals (62.9% versus 33.8%), participated in the community (50.8% versus 29.8%), were respected (68.4% versus 24.5%), and many more.
Next, we’ll learn about how Human Rights Committees at Trinity Services, Inc. help protect people’s rights and ensure that people are treated fairly. They will share some of the lessons they have learned along the way in maintaining and supporting Human Rights Committees.
Implementing Human Rights Committees At Trinity Services
By Jen Klouse, Admissions Director, Trinity Services
Honest and open communication is one of the most vital means of ensuring that people’s rights are protected. Trinity Services provides resources to those we serve through the use of conversation, educational materials, and activities to help them understand their rights.
The Human Rights Committee is an advisory group that works to ensure that people who receive support from Trinity Services have their rights protected. The committee is composed of Trinity staff, people that the organization supports, as well as community advocates who all have an essential role in committee functions.
The committee has 4 primary functions:
- Advocating for people’s individual rights
- Reviewing restrictive measures that are proposed or that are already in place for people receiving support
- Providing support to Trinity staff members regarding human rights
- Continuing to provide education and support to people receiving services about their rights, the Human Rights Committee, and resources available to them, including through platforms such as webinars, conferences, and events
People receiving support are able to request meetings with the committee at any time and are encouraged to participate in meetings involving limitations that may directly impact their quality of life. Any time these limitations are initially being discussed, the person who would be impacted is involved in that discussion and the decision-making. Housemates and peers who may be affected by the limitation in question are also involved in discussions and decision-making. People are able to request check-ins at any time and are encouraged to share feedback, progress, and concerns.
Supporting People During The Process
The committee strives to ensure that all people are directly involved however that may look for them. For example, some people may need staff to support them during meetings. For people who are unable to communicate verbally, the committee may need to be attentive to the person’s body language and their interaction with the staff member that is supporting them.
A person’s case manager asks them ahead of time how they would like to participate in discussions. The case manager reviews a form with the person, which reflects how they want to participate (by video conference, by phone, or in person) and if they prefer to discuss limitations privately or with the entire committee. People receiving services review and sign the form during these discussions to indicate they are comfortable with the review taking place and the information that will be discussed.
Creating The Human Rights Committee
The composition of the committee is key to its success. It’s essential to have committee members with different backgrounds and areas of expertise so that collectively, they can have a holistic understanding of each potential limitation under review. At Trinity, we have members of the committee who have medical, behavioral health, and case management experience as well as family members of loved ones with disabilities and people who have disabilities.
Committee members are chosen because of their demonstrated commitment to the organization’s values and CQL principles, and willingness to intervene on behalf of people with disabilities in a positive way. It’s also essential that committee members feel supported and are able to build positive relationships with each other so that they are able to have productive, open discussions where different viewpoints are respected.
Those discussions are vital to ensure thoughtful, thorough reviews of each person’s situation. It is important that the committee does not fall into habits of rubber-stamping each review. The committee reviews all related data, the person’s plan, and any other relevant materials during each discussion. It’s also important to recognize there is a fading plan for each limitation. This ensures that limitations are not being used unnecessarily beyond their need.
Empowerment Through Human Rights Committees
The committee, as a neutral party, helps people explore why restrictions might be helpful to them as they improve their skills and gain knowledge about responsibly exercising their rights, and can also help the person generate less restrictive alternatives to plans proposed by staff members.
In our experiences at Trinity Services, people participating in Human Rights Committee meetings and gaining greater awareness of their rights has been empowering for them and has helped the organization ensure that people have a strong voice and a choice in services. People who are supported to make their opinions known are empowered to take control of their own lives. It also gives them the strength to advocate for their peers and issues that are important to them.
Maximizing Rights Through Human Rights Committees
By Michael Clausen, CQL Director of Personal Outcomes
Human Rights Committees are an integral component of rights protection and promotion at organizations. A diverse and objective Human Rights Committee enables an effective due process system. It is critical that members have the support necessary to be successful in this role. When organizations provide robust support, and committee members are asking the right questions, rights and quality of life are maximized.
A Working and Effective Human Rights Committee
Everyone has rights! Despite this, sometimes a person with a disability hasn’t had the opportunity to learn how to exercise their rights responsibly. This webinar provides information about establishing and maintaining an effective Human Rights Committee (HRC).View The Webinar
Fine-Tuning Your Human Rights Committee