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by Angela Novak Amado, Elizabeth Pell, and Kim Zoeller
Friendships help us cope with life. Research in the general population shows that having friends positively impacts health and well-being. Humans are such social animals that loneliness can increase stress, lead to depression, and even shorten our lives (Perry, 2014).
Who your friends are matters, too. In terms of health impact, all friendships are not the same. Friendships that have a more positive impact on health are those with people beyond one’s spouse or other family members (Kroenke, et al., 2006).
The National Core Indicators (NCI)™ program is an effort by state developmental disability agencies to evaluate their performance using a nationally validated set of measures. NCI measures areas including employment, rights, service planning, community inclusion, choice, health, and safety. Currently, 42 states (including the District of Columbia) participate. For this article we examined data from the 2013-14 NCI Adult Consumer Survey to see if life experiences that contribute to overall health and well-being differ by friendship types for people with intellectual and developmental disabilities. The data reveal significant differences in many areas between adults with intellectual and developmental disabilities whose friendships are with family and/or paid staff only (i.e., limited friendships) and those who have friendships with people beyond paid staff or family (i.e., expanded friendships), including other people with disabilities and general community members.
In 2013-14, 17 percent of adults with intellectual and developmental disabilities receiving publicly-funded services reported having limited friendships; 76 percent reported having expanded friendships (NCI, 2015). NCI data showed that people with expanded friendships had better life experiences than those with limited friendships. Differences between friendship types were found in employment, choice of job, choice of where to live, and extent of community integration. Some of the life experiences in which NCI data show differences between friendship types are displayed in Table 1.
|Table 1. Experiences by Friendship Type|
job in past
|Chose job or
|Chose or had
input into where to live
|Can see friends whenever want to||Integrated
|Note: Data from National Core Indicators (NCI)™ (2015). Adult Consumer Survey 2013-14 Final Report. Retrieved from http://www.nationalcoreindicators.org/upload/core-indicators/4_23_15_2013-14_ACS_508.pdf|
Those with expanded friendships were more likely to have a mild level of intellectual disability, to use speech to communicate, to get around without mobility aids, and to live with family/relatives, or in their own or shared apartments, than those with more limited friendship networks. The differences reported are statistically significant.
Further research is required to understand the relationship between the personal characteristics examined and the friendship experiences (including their effects on each other). However, these findings do suggest differences in important life experiences for people who have expanded friendships.
Supporting people with intellectual and developmental disabilities requires constant discovery and conversation about what is really important to them. This is especially relevant when focusing on relationships and supporting people to build their own social networks. Everyone has a personal definition of what they want their social network to look like. People with intellectual and developmental disabilities are no different, but they may need support to discover the possibilities.
One way in which agencies can evaluate their performance and improvement in this area is using the Personal Outcomes Measures® developed by The Council on Quality and Leadership (CQL). For more than 40 years, CQL has been a leader in the development of progressive and innovative strategies to advance quality of life outcomes for people with disabilities; their methods have been used for agency accreditation and for quality improvement
The Personal Outcome Measures® can provide a guide for discussion with people, and the opportunity to measure progress towards personal goals. Focusing attention on the following Personal Outcome Measures® is key to advancing relationships and social networks:
Members of a person’s support team should strive to consistently offer opportunities that expose the person to people, places, and groups that may result in fulfilling experiences. One empowering approach and support in this area is to look at building “social capital.” Several years ago, CQL raised the bar for organizations to embrace the concepts and values of “social capital,” the interconnectedness and trust associated with reciprocal relationships. A large body of research tells us that when people, in general, have more social capital they lead happier and healthier lives.
Taking note to document people’s priorities for the above Personal Outcome Measures® (whether one uses the CQL system or not), as well as identifying strategies that the team will pursue for expanding social capital, are key. It is necessary to fully understand that as people have more life experiences, their priorities may change. Therefore, frequent conversations about relationships and social networks are important to continue successfully supporting people.
Clearly, expanding friendships has a positive effect on people’s lives. But how do you do it? There are some basic strategies that many have used to support friendship development between individuals with and without disabilities. Many are summarized in a free workbook, Friends (see http://rtc.umn.edu/friends). They include these three basic approaches and seven specific strategies and questions:
Engaging in pursuing these strategies and working on connecting people with other community members have revealed many policy and practice implications.
For provider agencies, factors that play a major role in success in community building include the commitment of the executive director, the person-centered values of the agency as a whole, and how the agency defines its role in relation to community. Agencies that have been successful in this arena have incorporated community building into staff job descriptions and individual service plan goals, developed structures for ongoing staff training and problem-solving, put evaluation systems in place to determine success, and developed a culture of perseverance and persistence. Staff have come to embrace their role as community builders, and some agencies have generated community-wide efforts. When agencies serve multiple individuals in one location such as a group home, effective strategies have included figuring out ways to support one-to-one connections with community members. Staff have developed skills in asking community members to get involved, and have shifted the focus from simply participating in activities in the community to searching out the people who can get more deeply connected.
Policies at the local, state and federal levels can also be more supportive of social inclusion. There are requirements in regulatory and funding streams for “community participation,” but these unfortunately often result only in physical presence or community activities, rather than true relationships, community membership, and belonging. Although services are governed by regulations that require community integration and promoting natural supports, some staff use regulations about confidentiality and data privacy to inhibit introductions to community members. This apparent conflict should be resolved.
Friendships are key to health and quality of life for everyone. Supporting individuals with intellectual and developmental disabilities in this arena is a new frontier for many in the services system, but it is critical and exciting both for those individuals and our communities.
Kroenke, C. H., Kubzansky, L. D., Schernhammer, E. S., Holmes, M. D., & Kawachi, I. (2006). Social networks, social support, and survival after breast cancer diagnosis, Journal of Clinical Oncology, 24(7), 1105-1111. Retrieved from doi: 10.1200/JCO.2005.04.2846
National Core Indicators (NCI)™ (2015). Adult Consumer Survey 2013-14 Final Report. Retrieved from http://www.nationalcoreindicators.org/upload/core-indicators/4_23_15_2013-14_ACS_508.pdf
Perry, P. (2014, February 17). Loneliness is killing us – We must start treating this disease. The Guardian. Retrieved from http://www.theguardian.com/commentisfree/2014/feb/17/loneliness-report-bigger-killer-obesity-lonely-people
The Council on Quality and Leadership (CQL) (2012). Personal Outcome Measures® manual (2nd ed). Towson, MD: Author. Retrieved from http://www.c-q-l.org/
Angela Novak Amado is a Research Associate at the Institute on Community Integration, University of Minnesota, Minneapolis. She may be reached at email@example.com. Elizabeth Pell is a Policy Associate with Human Services Research Institute (HSRI), Cambridge, Massachusetts. She may be reached at firstname.lastname@example.org. Kim Zoeller is President and CEO of Ray Graham Association in Lisle, Illinois. She may be reached at email@example.com
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Citation: Traci, M., Hsieh, K., Anderson, L., & Gaylord, V. (Eds.). (Winter 2016). Impact: Feature issue on supporting wellness for adults with intellectual and developmental disabilities, 29(1). [Minneapolis: University of Minnesota, Institute on Community Integration and Research and Training Center on Community Living]. Retrieved from https://ici.umn.edu/products/impact/291/
The PDF version of this Impact, with photos and graphics, is also online at http://ici.umn.edu/products/impact/291/291.pdf.
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