By Mary Kay Rizzolo, CQL President and CEO
During Developmental Disabilities Awareness Month, we call attention to the lives of those with developmental disabilities, and issues that affect them, such as advocacy, integration, respect, rights, policy, empowerment and so much more. The human services system plays an integral role in these issues, as provider organizations work to align with best practices and equip the people receiving services with the supports, tools and resources to improve their quality of life.
Despite these efforts, we still see areas where great improvement is needed. A fundamental factor influencing quality of life for people with developmental disabilities, is the way in which they are perceived, understood and treated. If you can’t establish a culture of mutual respect and equality, advancing other efforts can be limited. We find in CQL’s Personal Outcome Measures® data that when there are organizational supports in place to assist people in being treated fairly, that outcome is 60 times more likely to be present in people’s lives. Again, 60 times more likely! So how can organizations improve supports surrounding people being treated fairly?
In this article, first we provide insight into the presence of fair treatment in people’s lives, through Personal Outcome Measures® data about the outcome, due process and factors influencing fair treatment issues. Since this data demonstrates that there is a lot of work left to be done, we share two ways in which agencies can help support the achievement of this outcome. For those facing either financial or logistical barriers, we lay out how an organization can establish a virtual Human Rights Committee. To conclude on a positive note, we provide a profile of an agency that has experienced success through a Social Justice Committee, and share their efforts to empower people to improve quality of life.
Fair Treatment: Breaking Down The Data
By Carli Friedman, CQL Director of Research
CQL defines fair treatment as “people are treated fairly if [when] rights limitations are imposed, people are informed of options, consent is obtained and they are listened to. Due process procedures are applied when limitations on personal freedoms or rights have occurred or are contemplated… Regardless of the source or intent, people are entitled to have these [right] limitations removed” (Personal Outcome Measures® Manual, 2012, p. 30)
Out of a sample of 1,443 people with disabilities, 404 people identified fair treatment issues between 2015 and 2016. The areas where people with disabilities most often reported not receiving adequate due process were: right to access their money; right to have visitors at any time; and right to move about the community.
Was adequate due process involved?
The outcome for treated fairly is more likely to be in place for people who live in family homes (70%), their own homes (56%), or provider owned/operated homes (54%) than in other settings (private/state ICFDD, foster homes, state HCBS group homes) (45%).
Treated Fairly: By Residential Setting
Treated Fairly: Organizational Supports
According to our findings fair treatment outcomes are 9 times more likely to be in place when organizations solicit information about rights violations and/or fair treatment issues from people with disabilities.
Moreover, when procedures used by the organization are consistent with due process principles, people with disabilities are 20 times more likely to have fair treatment outcomes in place. When organizational supports are in place for treated fairly, treated fairly outcomes are 60 times more likely to be present.
Implementing a Virtual Human Rights Committee
By Jennifer Quigley
Leveraging technology to assist in the implementation of an effective Human Rights Committee (HRC) is essential especially when barriers such as volunteer availability and distance between programs are faced. While many of the same elements of an in-person committee are present, there are additional aspects to take into account when working in a remote situation. So what should you be thinking about when starting a virtual Human Rights Committee? What works? What doesn’t?
It is important for any agency looking to implement a virtual Human Rights Committee to write a policy and procedure detailing what adaptations are better suited for their needs. The document should include information about what technology is going to be used to best facilitate the meeting. For example, some committees will be successful utilizing a conference call while others will find it important to select a service such as GoToMeeting, GlobalMeet or WebEx, that allows computer screen-sharing and video conferencing. Each agency will need to evaluate their individual needs to identify which medium is appropriate for them.
The next consideration is to define roles and responsibilities within the group. I would suggest that the agency identify a point person who is responsible for collecting documents needed to effectively review behavior support plans, medications, blanket restrictions and incidents requiring HRC review. This point person needs to effectively collect information from various agency staff, organize this information and disseminate the information to committee members in a way that makes it easy for members to review. In my experience, it is best to send information for each person supported in a separate email with all documents related to that person attached at least 5 days prior to the HRC meeting so that members have sufficient time to review the documents and compile questions for the meeting. The agency point person should also include a prepared agenda, listing items that need to be reviewed at the meeting.
The committee also needs a chairperson who is skilled at conference call facilitating. Encouraging participation and managing the flow of the call can be difficult on conference calls, so it is important to have a chairperson who is comfortable taking charge and ensuring that the meeting is moving forward. Having a skilled, designated leader will reduce the length of most conference calls and make calls more effective.
Finally, the committee needs to have a notetaker who will document recommendations, votes and timelines. A virtual environment can present additional difficulties in notetaking, which is not present during in-person meetings. A notetaker should document concerns raised by committee members, list documents reviewed and write detailed notes concerning voting, including conditions placed on approvals by the team. Within a week of the meeting, notes should be sent out to the committee members for review to ensure that the notes are accurate and complete.
Participation of the people who have the restrictions in place can be difficult when utilizing a virtual HRC. Planning should take into consideration the support needs of the person supported to fully participate in the meeting. It is imperative to not only consider communication styles and support needs of the people supported during this meeting but also what supports are needed for comprehension.
The benefits of utilizing a virtual Human Rights Committee can be significant especially when distance and travel time is a concern. This approach allows service providers to recruit members with specialized skills from all over the country. Incorporating members with specific skills and knowledge such as nursing or direct support will help the Human Rights Committee reviews to be more thorough and will help to prevent “rubber stamping.”
Social Justice: A Success Story
By Lucy Klym, CQL Quality Enhancement Specialist
Exciting things are happening at the St. Louis Arc! As an organization that achieved Person-Centered Excellence Accreditation With Distinction from CQL | Council on Quality and Leadership, the St. Louis Arc is moving supports forward with the help of a strong self-advocate group called the Social Justice Committee. The Social Justice Committee has 30-35 people attending, and their entire leadership team is led by people supported by the organization.
The committee focuses on fostering and enhancing relationships across the St. Louis area to increase understanding of issues that matter most to them. Their mission states: “The St. Louis Arc’s Social Justice Committee is a group of individuals with developmental disabilities and their allies who meet monthly to exercise our rights, nurture relationships between the St. Louis Arc, participants, staff and agencies with social justice roles in St. Louis and discuss and act on community and legislative issues impacting our lives at the local, state, and national level.”
The Social Justice Committee attributes their growth and effectiveness to the peer support that each person brings to the committee meetings and established activities. Peer support heightens self-esteem, empowerment, and individual development (Clarke, Camilleri, & Goding, 2015). Sharon Spurlock, committee sponsor for the St. Louis Arc, shared how their growth in facilitating relationships has come from each committee member learning from their fellow peers and having confidence to create and utilize new partnerships and learning opportunities.
Over the course of its six-year history, the committee has led flash mobs in local areas across St. Louis that carry with them messages of inclusivity for all members of the community. The committee has spoken at conferences, and they have conducted advocacy training in the areas of:
- Legislative advocacy
- History of disability supports
- Learning to tell your story
- Participation in staff training
- Developing tools to convey organizational and rights policy in an accessible way
“It is good to tell people what you want. It’s important to speak up for yourself.”Sam, member of the Social Justice Committee
Today, the Social Justice Committee continues to enhance accessible policy measures, including understanding around natural support networks. They are working to create and implement self-determination training, and the committee is driven to increase avenues that expand voter access and opportunities as a citizen. “It is good to tell people what you want. It’s important to speak up for yourself,” says Sam, a member of the Social Justice Committee.
To accomplish their overarching goals, the Social Justice Committee drives to expand partnerships and relationships. They are hoping to create a community living room at local colleges and universities to facilitate natural conversations and education on self-determination and rights issues. The Social Justice Committee has also partnered with Washington University in St. Louis to participate in Design for America. This group works to facilitate solutions in a comprehensive problem-solving manner.
The partnerships, education, and advocacy continue to drive the committee forward and grow. With respect to self-determination, focusing on Social Justice issues that matter most to the people supported has enhanced supports, services, and education within the organization and across the St. Louis area through personalization and knowing what matters most to the people supported.
Clarke, R., Camilleri, K., & Goding, L. (2015). What’s in it for me? The meaning of involvement in a self-advocacy group for six people with intellectual disabilities. Journal of Intellectual Disabilities, 19(3), 230-25.