Posted on March 30, 2016

By Mary Kay Rizzolo, CQL President and CEO

March is a time for collective awareness, from coast-to-coast. These 31 days have been filled with gubernatorial declarations, articles, advocacy campaigns and social media outreach. What started as a single presidential proclamation in 1987, has grown into a national movement to help people recognize the progress that those with developmental disabilities have made, highlight the societal barriers encountered and call attention to the actions that still need to be taken. March is Developmental Disabilities Awareness Month.

Looking At Outcomes-Data Surrounding Rights

Although this important month is coming to a close, the focus on awareness, rights and best practices for people with intellectual and developmental disabilities (I/DD) cannot. Whether understanding the most critical issues in advocacy or supporting self-direction, an understanding of individual rights sets the stage for raising awareness. By analyzing outcomes-data related to rights and listening to the stories of DSPs and individuals supported by agencies, we gain some valuable insight.

When it comes to rights, CQL’s PORTAL Data System shows us that for 2015-2016, preliminary results from 267 Personal Outcome Measures® interviews, 61.4% of people do not feel that they are exercising their rights.

While this data alludes that there is a lot of work left to be done in improving rights, there are some rights-related outcomes that are overwhelmingly present in people’s lives. For example, 94.1% of people report that they have the right to voice their own opinion. In addition to this, a vast majority of people receiving supports tell us that they have the right to file complaints about their services (93.1%), the right to freedom from coercion and restraint (92.9%) and the right to practice their religion (91.2%). Of course, while the goal would be to have 100% reporting the presence of these outcomes, this data shows us that progress is being made.

In contrast to those rights that are overwhelmingly present, according to the Online Data Tool, the lowest-ranking outcome concerning rights is people having access to their money, at 45.2%. Along with this outcome, other rights that are not present as frequently in people’s lives are – the right to move about the community (61.7%) and the right for personal decision-making (63.1%).

When looking at the data, it is important to consider other contextual components that may be behind the disparity in the presence of rights-related outcomes. Of the demographic data collected, residential setting of the person receiving supports stands out. When looking at those living in congregate residential settings, just 28.1% of people report exercising their rights. In contrast, the presence of that outcome is higher for those living with a host family or in family foster care (40%), in their own family’s home (54.4%) or especially people who own a house or apartment (62.1%).

Exercising Rights, By Residential Setting

So what does this mean for human service organizations? How can agencies better support and promote rights? Let’s explore this through the highest and lowest-rated rights – the right for people to voice their own opinion, and the right to access their own money – respectively. As we know from more than 20 years of experience utilizing Personal Outcome Measures®, this starts with attaining meaningful answers by asking the important questions, and then connecting the dots with self-advocacy and self-direction.

Right To Voice Their Own Opinion

By Tia Nelis, SABE President and CQL Board Member

I’m glad the data is coming out, that more people have the right to voice their own opinion. It’s a good sign that the outcome is in the higher end than the lower end, although there’s a “but” in there. When you’re with agencies in different places, you have a right to voice your opinion, but at times it’s what the agency wants you to voice. There’s certain times if the agency really disagrees with your opinion, they might not give you that right to voice that opinion. I’m glad more people have the opportunity to voice their opinion, but we still have a lot of work to do.

You can work on this with peer support. Peer support is people with disabilities and other persons with disabilities. It’s kind of better when it can happen that way. People feel more comfortable to talk to people, because they’ve gone through the same thing that they have. You both have a disability. You both can connect on some of those things that are important to you. You both know how it feels to be discriminated against, or made fun of, or whatever the subject is. That peer support kind of is more working together and feeling more comfortable to share and express the things that you want to say.

Asking The Right Questions

By Becky Hansen

Finding your voice is a powerful experience. Sometimes, people who receive human services and supports struggle with having their voice heard and respected. Having the opportunity to share thoughts, viewpoints, ideas and dreams makes us feel valued. The conversations inspired by Personal Outcome Measures® directly contribute to this experience.

The 2015 data around people exercising their right to voice their opinion is encouraging since, as mentioned, roughly 94% of people are telling us that outcome is present in their life. While the majority of people interviewed feel that they are able to voice their opinion, other data points indicate that there is more work to be done. Asking people their opinion is an important component to providing quality support. Providing support to help people in putting their ideas and opinions into action, is equally important. Asking and acting should go hand in hand.

Supporting people to voice their own opinion starts with asking the right questions. When learning about a person’s unique experience and perceptions, it is important to approach the conversation with an open mind and heart. Our role is not to judge or define opinions, but rather to explore, understand and support. When we engage in a conversation inspired by Personal Outcome Measures®, our goal is to learn about the story of the person’s life, from their perspective. Below are a few examples of questions we ask, that can help us further understand this outcome:

• Who asks you about your opinion?
• Who can you go to when you want to share your thoughts, ideas and opinions?
• Can you tell me about a time when you disagreed with a decision someone made? What happened?
• What support (if any) do you need to share your thoughts, ideas and opinions?

Right To Access Their Money

By Cathy Yadamec

How much money do you have in your wallet right now? How much money do you have in your bank? How do you decide to spend your money? Thinking personally about how you keep, spend and manage your money is a good frame of reference in thinking about how to support people.

Organizations frequently develop systems and practices focused on protecting people’s money. Many of those systems are a reaction to the requirements of the funding source and the Social Security Administration. It is clear that opportunities to personalize and support people to be engaged in managing their money exist.

CQL looks at the systems and practices during accreditation reviews or talk with people using the Personal Outcome Measures®, we find that organizations typically do a good job of protecting people’s money. Unfortunately, those same systems limit rights and unnecessarily restrict access to money. Organizations must figure out how to support people to manage or learn to manage their own money, as they want.

To develop individualized supports, you can use the Personal Outcome Measures® first to learn about what the person wants by asking questions like:

• How do you spend your money?
• Where do you keep your money?
• When you want to buy something or pay a bill, what do you do?
• How does that work for you? Why?
• What would you keep the same?
• What would you change?

Balancing Rights With Responsibilities

By Tia Nelis, SABE President and CQL Board Member

Access to money is very important, but one problem is if you make a mistake, people take away that right. If you write a bad check, there goes your check book. If you spend too much money, then that goes. People don’t always get that opportunity to make mistakes, and to understand then, what happens when you do. Instead of helping people learn about budgeting, sometimes agencies just automatically strip that right from them.

There’s different ways you can help set it up, so that people can still manage their money. You can set it up with bank accounts that you can have only so much access. You can set it up so that only a certain amount of money can be taken out, and then you can’t take out any more. There’s different things you can do for people that they still have control over it in some way.

When we do our self-advocacy groups and trainings, we talk about rights like access to money, and we talk about responsibilities. Yes, it’s important to tell them they have rights, but they also have to be responsible. So you have a right to live in your own home but you’re responsible for paying the rent, keeping it up, and then if you don’t, you could lose your home. I think rights are really important but sometimes when people talk about rights they forget to teach about responsibility.

Self-Direction & The Universal Declaration of Human Rights

By Lucy Klym, CQL Quality Enhancement Specialist

The Universal Declaration of Human Rights identifies key rights that must be paired to opportunity to implement self-direction concepts. For example, Article 23 states that (1) Everyone has the right to work, to free choice of employment, to just and favorable conditions of work, and to protection against unemployment. People supported must be given the choice in employment avenues and work preferences, including employment schedule to promote personally-defined success. This same concept of self-direction can be applied to religious preference, social groups, leisure activities, along with voicing opinions and accessing money. The concept of self-directed supports pairs those rights to opportunities and toward goals and service delivery models that guide supports forward; thus, fades supports in a positive manner by recognizing identified priorities for people supported.

When we think about self-direction, we naturally think about decisions we make to start and guide our days, weeks, months and future. For people supported, we need to have these same conversations rooted in the promotion of supported decision-making, Personal Outcome Measures®, and implementing daily tools to ensure self-direction not only becomes a program service model, but a natural part of support. Integration of self-direction concepts extends awareness to the promotion of advocacy in its most natural form.

Self-direction is a human right. As March represents Developmental Disabilities Awareness Month, the conversation must be extended to the fullest scope of rights people have to guide their respective supports forward. For many people supported, self-direction begins in a person-centered planning process. The Personal Outcome Measures® provide a reliable tool to initiate the process of goal discovery and self-direction by knowing exactly what the person supported hopes to achieve and identify the guideposts to reach that particular goal.

Here are some ways to promote self-direction within a service model:

• Rights education utilized in varied applications and examples
• Complete Personal Outcome Measures® interviews on a regular basis to identify preferred goals and recognize scope of rights education
• Utilize The CQL POST App
• Utilize supported decision-making tools
• Create individualized support calendars based on people’s preferences, including staffing preferences and involvement in hiring process
• Ensure choice is given in preferred communication methods
• Educate people supported on local community events and social groups
• Recognize how people learn best
• Promote a forward-thinking organizational culture
• Emphasize dreams

Reflection on Respect

By Faythe Aiken

For persons with disabilities, friends, advocates and professionals alike, a key component around experiencing rights is feeling respected. When we voice our opinion or exercise the right to access our own money, that can be an element of experiencing respect. It is important to feel respected by the many people that we interact with in daily life.

Through CQL’s PORTAL Data System, we can see that people are experiencing respect in different degrees. The outcome of respect is present for 58.3% of respondents in total. 73% of people feel like they are respected by their family members, 81% of people feel like they are respected by the staff in their life, and 70% of people feel respected by their housemates or roommates. The Online Data Tool digs deeper into how and why people experience respect. 74% of people experience respect as a result of interactions with others that reflect concern for the other person’s opinions, feelings and preferences. While the majority of people are experiencing rights, there is still work to be done.

Key Questions We Can Ask Ourselves About Respect And Rights:

• How do I experience feeling respected?
• Am I speaking up for things that I see as unjust in my life? If so, how is that received by those around me?
• How can I encourage others to speak up and demand their rights and to be respected?

Keeping these questions in mind and being aware of how rights and respect for yourself and others are critical for DD Awareness Month and for the rest of the year!