By Mary Kay Rizzolo, CQL President & CEO
The Three Rs – Rights, Risk, and Respect – all play an important, interconnected, and interdependent role in the pursuit of increased quality of life for everyone. We find this as we become older, learn new skills, meet new people, and try new things. There is also a causality to it all. If there is a culture of respect, it creates an environment where rights are exercised. As you are exercising more rights, it is expected that you could be exposed to more risk. Then while people respect you enough to recognize your inherent independence, competence, and humanity, your rights are appreciated and supported regardless of either real or perceived dangers. When people learn about individual freedoms, make informed decisions, explore responsibilities, and receive desired supports, potential for risk can be reduced, rights are understood, and respect will flourish.
This is especially true for people receiving supports in the human services system. Due to a range of issues, including biases and misconceptions about competency, longstanding paternalistic tendencies, fears involving liability issues, systemic persecution, and more, people with intellectual and developmental disabilities, mental health disabilities, and older adults often face additional barriers that others do not. To further explore, assess, and confront issues connected to the “Three R’s” agencies across the globe use CQL’s Personal Outcome Measures® to discover how it plays out in people’s lives. For example, when looking at rights we ask questions like these of people receiving supports:
- What do you know about your rights as a citizen?
- Do you have access to information about your rights as a citizen? As an employee? As a person receiving services?
- What rights are most important to you?
- Are you able to exercise your rights without difficulty?
- What information or support do you need to help you to exercise your rights?
- With whom can you talk about your questions or concerns regarding rights?
Along with having a conversation with people supported, there are also interviews with people who know them best, oftentimes those providing the supports. If we’re trying to find out more about how rights are supported, we ask questions such as:
- How is the person supported to learn about his or her rights?
- Does the person need support to exercise rights?
- If so, what are the supports and who provides them?
- Are there any barriers that affect the outcome for the person?
- How do you assist the person to overcome barriers to this outcome?
- What organizational practices, values, and activities support this outcome for the person?
When we ask these questions, we’re able to better understand the presence of outcomes and supports in people’s lives, and use that information to affect change. It can be used at the individual level to explore various rights in that particular person’s life, and the supports that are or could be provided to achieve their individually-defined rights-related outcomes. At the aggregate level, agencies can collect and analyze data to understand areas for improvement, and help guide new organizational initiatives to support people in areas like voting, religion, privacy, equality, and education.
The Fourth R: Research
By Carli Friedman, CQL Director of Research
Despite rights being inalienable, out of approximately 1,500 people with disabilities in our sample, only 42.6% of people exercise rights (outcomes present). A number of rights restrictions relate to a lack of dignity of risk, which is tied to paternalism and a general lack of respect for people with disabilities. In fact, our PORTAL Data System reveals that when people with disabilities are respected they are not only 6 times more likely to exercise rights, they also have approximately double the total quality of life outcomes (14/21 versus 7/21). Unfortunately, only 54.8% of the people with disabilities in our sample had the ‘people are respected’ outcome present.
To remedy this, respect from both individual residential support staff and larger organizational practices can promote the rights of people with disabilities. For example, people with disabilities treated with respect by residential support staff are twice as likely to have the ‘people exercise rights’ outcome present than people not treated with respect. This is true even when controlling for impairment severity.
By putting supports in place organizations can not only facilitate the respect of people with disabilities, but can facilitate people exercising their rights as well. Ensuring interactions with others reflect concern for person’s opinions, feelings, and preferences, providing opportunities for the person to participate in challenging and interesting activities, knowing what is important to the person with regard to respect, ensuring that interactions with the person are respectful, and providing supports to enhance a person’s self-image all significantly impact the likelihood of people with disabilities exercising their rights (see figure). For example, when an organization knows what is important to the person with disabilities regarding respect, the person with disabilities is approximately 3 times more likely to exercise rights than when an organization does not know.
Moreover, when organizations respect people with disabilities – when organizational supports are in place – people with disabilities are 6 times more likely to exercise rights and 7 times more likely to be treated fairly, even when impairment severity is controlled.
Despite the benefits of organizational supports, only 60.1% of the people with disabilities in our sample had respect organizational supports in place. Moreover, only 65.9% of people with disabilities had the opportunity to participate in challenging and interesting activities. These disparities represent opportunities to ensure people with disabilities’ access to their rights, as well as improve their overall quality of life.
“It’s not a rights restriction. We are doing it to keep him safe.”
By Vickie Overpeck, former CQL Quality Enhancement Specialist
Having participated in numerous CQL Accreditation reviews as a Quality Enhancement Specialist for CQL, I have heard “It’s not a rights restriction. We are doing it to keep him safe,” from many providers in defense of a formal or informal practice put in place with the good intentions of protecting a person supported from harm. But does just protecting a person really reduce risk?
I learned a valuable lesson many years ago. The lesson was taught to me by a young man who moved from the state institution where I was working, into a community home. This man was, by our professional assessment, very skilled and “ready” to move into the community. But only a few days later, the man was returned to the institution’s infirmary to recover from a severe laceration of his mouth. He had bitten into a drinking glass during a meal and cut his mouth and cheek, requiring multiple stitches. So what does this mean? Was he not “ready” to live in the community?
Generalized, blanket “safeguards” were in place for everyone living at that time in the institution. Everything potentially breakable was plastic – the mirrors, the windows, the drinking cups. There was no glass anywhere. Perfume and aftershave in glass bottles were prohibited or kept locked up. It was for the protection of “vulnerable” residents. But the safeguard of “no glass” also had an unintended impact. It had prevented this young man, and all others who lived with him, from learning about the associated risks of using glass objects and how to handle glass safely.
Providers are in a tough spot. They are charged with keeping people safe at all costs. Regulators and families send the message that absolute safety is “Job Number One.” Every incident and accident is closely scrutinized and every response often criticized as inadequate. The reaction of many providers and support staff is to restrict certain rights like freedom of movement, privacy, freedom of association, or access to possessions, thus overprotecting people in the name of safety.
The consequences of protection by restricting rights and opportunities can be many. People can begin to feel they are incapable of taking any kind of a risk. This can result in learned dependency, a lack of motivation, low self-esteem, and arrested learning and development. Many rights many be restricted or not exercised fully. The person’s quality of life is negatively impacted as well. Choices become limited. People may not be able to do the activities they once enjoyed and are discouraged from trying new activities.
So what’s a provider or supporter to do?
The answer is to develop individualized and intentional supports, unique to the person and designed through direction by the person and his/her support network.
- Learn about each person’s preferences and unique skills and challenges.
- Generalized safeguards or blanket restrictions must be avoided.
- Risks are reduced through assessment, planning with the person, providing education, supporting skill-building, and designing unique and individualized supports with the person at the center.
- Respect for individual dignity, while understanding the unique vulnerability of each person, is key.
- Connecting people to their community and supporting them to develop healthy relationships will also reduce risk over time.
The solution is to approach risk not from a perspective of restriction and protection, but with an emphasis instead on learning, planning, affirmation of rights, and community integration.
Risk exists for all of us, even if we are home in our own bed. But the things that keep us safe are the same for all people. They are the same things that are needed to have a good life – freedom, relationships, opportunities for learning and growth, participation in community, and control over what happens in our day-to-day lives.