By Mary Kay Rizzolo, CQL President and CEO
Creating connections with others is an important part of life, but people receiving supports from human service organizations often face additional barriers to establishing relationships with others. As we close in on another Valentine’s Day, now is a good time for reflection, understanding and action steps to help support people in creating and enhancing quality connections with those they care about. Whether it’s being caused by a lack of exposure to community events, limited access to transportation or societal stigmas surrounding disability or mental health diagnosis, outcomes involving friendships, relationships and intimacy are often lacking in the lives of those receiving supports and services.
In fact, in some areas, people with intellectual and developmental disabilities are struggling more now than in years past. In over 5,300 interviews conducted by CQL staff during the past 15 years (2001-2015), we find that the percentage of people experiencing intimate relationships is actually decreasing over time; the same being true for outcomes tied to people interacting with others in their community. Why might this be?
CQL’s PORTAL Data System for the Personal Outcome Measures® (POM) offers us some fresh insight into the data. For instance, looking at 2015-2016 outcome data, fewer than half (46.9%) of people interviewed have intimate relationships present in their lives. Digging a little deeper, we find differences between those who have authority to make their life decisions independently, those who make decisions with support, and those with some level of guardianship. At this point, it appears that adults making their own decisions are more likely (58%) than those who are supported (32%) or have some level of guardianship (41%) to have intimate relationships present. This sample is small however (226 people interviewed over a 13-month period), so it will be important to revisit this data as more interviews are conducted.
A different look at the data shows us that where a person lives might make a difference in whether or not they have close relationships. So far in 2015-2016, it looks like adults living in their own home or apartment are more likely to experience intimacy than those living with family or in a provider-owned home or apartment. Is this surprising?
So what does this mean for provider agencies? It is crucial that providers listen to people, get a better understanding about the relationships they desire in their life, and support them in nurturing those relationships in the most independent way possible. Below you will find specific steps to take, some great perspective about the importance of relationships and how a provider in Australia is helping people in achieving outcomes involving friendships, relationships and intimacy.
Supporting People In Relationship-Building
By Becky Hansen
People who receive human services and supports are at the heart of every training, consultation and accreditation that CQL engages in. Our mission is directly tied to fulfilling personal outcomes by defining, measuring and improving personally defined quality of life. Through our work, people have told us again and again that at the end of the day, what matters most to them are the relationships that they have. While many organizations recognize the positive and important impact that intimate relationships can have on the lives of people, they are often unsure of their role in fostering, maintaining and supporting these.
While family and friends are a key component to our sense of well-being, nothing compares to falling in love or finding your soul mate. Intimacy is about sharing yourself with someone who loves you for who you are, and you love him or her for who they are. Our intimate relationships are the people we trust the most and who we feel most comfortable with. These are the people in our life who we trust with our secrets, turn to for support and rely on. Intimacy and the way we express and share it, is personally defined. All people deserve to have the opportunity to experience intimacy.
To Support People In Achieving Their Outcomes For Relationship-Building:
- Encourage people to think about and talk about their intimacy needs with someone that they trust and feel comfortable with. Treat this information with respect.
- Support people to understand and practice reciprocity in relationships.
- Ensure people have the opportunity to meet people who share their interests.
- Address barriers such as transportation needs.
- Give people the time, space, privacy and trust they need to get to know someone well.
To Support People In Achieving Their Outcomes For Intimacy:
- Believe that all people have a fundamental right to love and be loved.
- Have no judgements about whom a person chooses to love, regardless of gender or sexual orientation.
- Understand that adults have the right to make their own decisions about dating, expressions of intimacy and marriage.
Entering into a relationship is a big step for anyone. Decisions that we make about our relationships and our expressions of intimacy often lead to questions about consent. Here are a few considerations to keep in mind regarding the role of consent and Supported Decision-Making as it relates to our role in supporting people.
Consent, Guardianship, and Supported Decision-Making
All people have the right to make choices. Most people rely on others to help them make important decisions in their life. People often rely on friends, spouses, co-workers or professionals to help make decisions. When we receive informal help from others in decision making, this is considered Supported Decision Making.
Most of us successfully use Supported Decision Making every day! Just because a person needs help with decision making does not mean that they need a guardian. The goal is always to find a way to support the person to make decisions vs. making decisions for them.
Presume competence. Always. Start with the knowledge that the person is capable and is already making decisions every day. Reflect on how they accomplish this. Some people make decisions by telling us what they want, while others show us. Everyone communicates and everyone makes choices. Start with discovering what is already working and build on it.
- Ensure that consent is informed. Informed consent is based on education, experience and exposure.
- Provide information about what is being consented to, in an accessible manner.
- Ensure that consent is time-limited and well-defined.
- Respect the person’s right to rescind consent if they change their mind.
We believe that people should be empowered to be in the driver’s seat of their own life. It’s our responsibility to provide the right level of support to make that possible.
Relationships In My Life
By Liz Weintraub, Former CQL Employee
There are a lot of issues that need to be worked on when you are talking about people with disabilities. One of the most important issues is helping people to not be so lonely. I believe that people need and desire to have friends, or at least one friend. It’s natural to have friends. When you go to school, you are often taught to have friends. For people with disabilities it’s very hard, or at least, I found it was very difficult to make friends.
When I moved from New Jersey to Boston in the nineties, I told my parents that I didn’t need or want a provider. The reason why I said that, was because I disliked my provider. At that time, I thought that all providers were all the same. However I soon realized that a provider could help with making friendships that people can rely on.
When I was living in Boston, most of my friends were married or had their own lives to deal with. Even though they were my friends and they meant well, they just didn’t always have the time to do things with me. When my friends were busy I soon became tired of coming home to the TV. The TV can’t have a conversation, and what I really needed and wanted was a friend to have a conversation with.
I was lonely. Once I went back to a provider, I soon had a lot of friends- friends to do things with and most importantly, friends to talk to. And guess what, I wasn’t lonely anymore.
My provider helps me do this. There are a lot of activities that they provide to me, where I can meet and socialize with friends. For example, once a month, there’s an activity where everyone can go and play games and make friends. With so many activities that my provider offers, I am always guaranteed a friend to talk to or be with. And therefore, I am not lonely anymore. The community gives a lot to us, through many ways, so we need to learn to give back. My provider teaches my friends and I how to do this very well. Through this, we have another opportunity to make friendships or relationships that will last many years.
One of my favorite quotes is: “To be a friend, is to have one.” What that means to me is if you are my friend, then I will return the favor, and try my hardest to be your friend. Making friends is very important to me. It doesn’t mean that I am popular. What it says to me, is that I belong, whether or not, I have a disability.
Social Impact In Australia
By David Glazebrook, Manager of Innovation & Development, Melba Support Services
‘So, what more can we do for you?’ was the question asked of people supported by Impact Support Services in 2008. The resounding answer was ‘get me a boyfriend/girlfriend!’ So we listened, and we acted. Drawing on the ideas of 20 people from Impact and a range of other disability services, we set about developing how we could address this, and in 2010 the Social Impact Program started.
Social Impact breaks down the mechanics of friendships and relationships, and everything that comes with them, while exploring communication, body language, self-confidence, social media, personal health and well-being, goal-setting, community involvement, understanding how relationships work, safety and how to avoid risks. And yes, we talk about dating, the laws of sex, sexual abuse and safety.
However, we knew that the skills alone were not enough. They had to be put into practice. Why did we think all of this was so important – because humans are naturally social beings.
Almost everyone wants friends – people whose company we enjoy and those we want to spend time with, doing fun stuff. Most of us would like a relationship and to find that special person to share our lives with. The benefits for people are huge; happiness, increased self-esteem, knowledge and improved health are just a few.
From the start, people have been part of the design and continual development of the program’s content and delivery. For example, when we began we didn’t have anything about social media – but given its presence in today’s society, social media, and how to use it safely, is now included.
After 6 years we are pleased to see a growing awareness of the need for people to have a life of their choosing where they make decisions about what they want. We don’t pretend that we have perfected this and continually work and evaluate what we are doing. We have seen great friendships form, relationships happen and yes, even bust ups! We are committed to continuing. This is a human right. Knowledge provides opportunity, safety and individual choice. Contact us at email@example.com or visit www.melbasupport.com.au to find out more, because the more of us doing this the better.
A dad who has a daughter in her mid-20s commented “My daughter’s friends are my friends and that’s wrong. She should have her own.” He is correct. People have the right to have friends and relationships of their choosing.
Reflections on Relationship-Building
By Kerri Melda
When we talk about relationships, we naturally think about friendships and romantic partners. But there are many other ways, much broader in scope, that we seek out and find companionship and a sense of belonging. We might pursue or have a variety of social roles to connect and bond with others. Some connections are linked to our role at home (e.g., child, parent, uncle, niece, spouse, roommate), others based on our activities in the community (neighbor, volunteer, team member, church member, club member), and others yet are formed at work or school (classmate, co-worker, mentor, student). Each of these roles connects us to one another. We feel valued when our lives interconnect with others. Through participation in our community, we can share our unique qualities, learn, and give back. We would be missed if we didn’t fill this role, and it’s through these interactions that we often develop the friendships and relationships we seek.
So, there is some good news as we look at the past 15 years of CQL POM® data, through CQL’s Online Data Tool. Over time, there have been slight increases for people achieving personal outcomes tied to community participation. And perhaps more significantly, there have been greater gains seen for people performing different social roles. Over the past 15 years, these numbers have risen from 35% to 46% where this outcome has been present. Momentum is moving in the right direction.
To keep this momentum going, we should regularly ask ourselves:
- What are we doing to make sure that everyone has a variety of role options available to them?
- Are we supporting people to learn new skills, develop new interests, and hone their social interactions?
As you support people seeking that special someone – someone who can be a close friend, a companion, a confidante, or more, remember that exposure to new people, places, things and experiences can provide a foundation for developing deeper relationships.
CQL is committed to helping organizations support people in developing friendships and relationships. Please contact us with any questions you may have about this important issue.