Disability is a broad-based issue that affects some 70 million people in North America. It relates to either physical, cognitive, sensory, or emotional challenges that get in the way of everyday life realities. These disabling issues can be either overt (obvious) or covert (hidden); they can be congenital (at birth) or acquired somewhere down the life cycle. In fact, if you live long enough you will certainly experience a disability in a personal way. With all of this in mind, disability is a powerful phenomenon that affects all ages, nations, peoples, and experiences, and statistically, one out of every five people in North America are so challenged. And the data is only sure to rise.
Many of these people with disabilities; men, women, and children, are recipients of services and programs - thousands of programs, that are run by private groups (both profit and nonprofit) as well as government entities. In fact, some estimates suggest there are over 100,000 agencies and programs around North America that offer some focused programs directed towards people with disabilities. I understand this, because I am associated with such an organization. CLASS (Community Living and Support Services) is a nonprofit entity in Pittsburgh, PA serving some 1,500 men, women, and children with all types of disabilities in our community.
My organization, and the thousands like it around North America (and around the world), is focused on trying to meet the needs of the people we are chartered to serve. For the past 43 years of my association with CLASS we have been attempting to listen to the men, women, and children we serve and help them get to their goals; and in all my years as a service provider, I have been working to create opportunities for these very goals. Here is what people with disabilities (or their families) have told me they wanted:
- Meaningful things to do in their lives. For most of these folks it has been to get a job. Indeed, vocational rehabilitation has been the primary goal for most individuals with disabilities for many years.
- Safe and affordable places to live – housing. Many people with disabilities have experienced institutionalization and would like to live in the greater community.
- Opportunities for transportation in and around their communities. The availability of means to become an active part of their community rather than to be stuck at home.
- The development of friendships and relationships in the community. Everyone wants and needs friends.
As a service provider responsible to the consumers of our program and their families, it is important to take a look at these goals and to measure how well we have done. In fact, any organization that wants to be successful should (must) make sure that their customers are satisfied – that they are achieving their goals.
In looking closely at these goals, especially with the data we now have, the overall results, on whole, are not very good. Certainly people we have served are better off than they were when we met them. However, in the larger scheme of culture and community, they have not really been assimilated. This is not only tragic, but in some way suggests a travesty in rehabilitation. Look at the data on each goal:
- Jobs. Data suggests that people with disabilities remain among the most highly unemployed and financially destitute cohort in North America. While unemployment rates hover around 5.5%, upwards of 70%, clearly 2/3’s of the close to 40 million working age people with disabilities are unemployed.
- Housing. For most people, the ultimate goal for housing is home ownership. In fact, studies shows that upwards to 68% of adults over the age of 18 own their own home (or live with someone that does). For adults with disabilities, only 6.1% own their own home. The vast majority of people with significant disabilities live in some long term living arrangement sponsored by some human service agency, or in their family home relying on relatives for their primary attendant support.
- Transportation. The majority of people in developed countries have privately owned vehicles. For people with disabilities, both owning and operating a vehicle is often out of the question. This leaves public transportation, or rides from friends/family as the primary recourse. Most people reading these words know that public transportation is often not available or accessible for most people with disabilities. Saddest of all is that family and/or friends are also not often available.
- Friends. Perhaps the greatest failure in disability outcomes is the lack of friendships and significant relationships. In fact the social isolation and disconnection for people with disabilities is something that any professional in the field can tell you about, but until very recently (and in efforts I helped initiate) has never been examined in any focused way. This is a powerful statement in and of itself.
As I have been thinking about this failure in all 4 of these goals, what has become clear to me is if you look for ways to enhance outcomes in any of these areas, it ultimately comes back to this 4th listed goal: Friends and relationships. Sociologists call this social capital. Consider this:
- Most people get jobs via their social networks. In fact, one recent study found that 71% of respondents to a survey (not people with disabilities) reported that they got their first job though a friend or family member. In fact, we all know that the best way to get a new or better job is though your social networks – your social capital. Certainly, even if you find a job on your own, you still need to list references – friends that will vouch for you. Social capital is also closely tied to vocational success, not only in getting, but in keeping a job as well. Most people lose jobs not because they can’t do the work, but because they have difficulty fitting into the social fabric.
- Housing is another area where social capital is critical. Most people reading these words are probably living with someone they chose from their social network. In fact, when considering living arrangements, social capital is an absolute for most people. No one, unless they are in an institutional model, live with someone they have not chosen. Yet, most people with disabilities find themselves in housing “programs” where their roommates are selected for them by an agency, program, or case manager.
- Lastly, transportation is closely aligned with social capital. Unless a person is poor or institutionalized, they usually ride in their own car. If they have no access to a car, that person often rides with friends.
Clearly the more social capital you have the better your chances for getting a job, finding someone to live with, and getting a ride. Social capital is directly related to the key goals that people with disabilities report they want from the systems. And yet there is more.
If you push the outcome discussion to a higher level, and think about the most important quality of life indicators known to people in general, we find that social capital is directly connected there as well. When sociologists ask people to identify the most important variables they want for the people they love, the top three answers are – health, happiness, and longevity. These three things, health, happiness, and longevity are the highest measures of life success - for all people.
To this same point, studies over the past 40 years show clearly that the key to health, happiness, and longevity are all enhanced by our social capital – the relationships in our lives. Quite simply the more relationships in your life, the healthier you are, the happier you are – and listen to this – the longer you live.
So the facts are clear – the very things that people with disabilities want from the human service system can unfold, and are enhanced, by social capital – yet the very notion of social capital has not at all been embraced, or understood by these very systems that relates to people with disabilities. As stated earlier, we didn’t even know the extent of social isolation for people with disabilities until the Interdependence Network (IN), an international coalition of disability advocates, conducted an exploration in this area.
Using the “Social Capital Benchmarking Survey” developed at Harvard University, the IN surveyed 250 people with all types of disabilities in the United States, Canada, and Australia. The findings were then compared to the benchmarks developed by Harvard (Saguaro Seminar Series) and as you might imagine, found people with disabilities behind the norms in every benchmark area. This data is available to review at the IN website, www.buildingsocialcapital.org.
So what does all of this mean for us? Clearly, if we want to see people with disabilities more successful in community outcomes, we must start with a shift in perspective and consider the power and potency of relationships. To this extent, I recommend the following key actions/energies:
- We have to shift from a micro perspective where we look at the dysfunctions of disability and begin to understand and build competence in the macro notion of community. All people have things that make them engaging. Let's stop trying to "fix" people, and connect them via their affinities.
- We need to define community and understand the key elements related to community building. Most of us in human services give lip service to community, but have not really explored the elements, notions, and aspects associated with it. We must try to shed our "clinical bent" and think more anthropological.
- We must appreciate that all social capital starts with basic affinities and commonalities that people have. These affinities, or cultural commonalities, are the first step to community and relationships. When people begin to embrace that which is common, they begin to dismiss the differences that can get in the way.
- We need to explore community and find the places of association where people share their affinities. All communities are rich in assets and opportunities. We all want to gather around the things we like, and these gatherings offer the start point for our social capital.
- We need to gain competence in how communities operate. This means understanding that all communities meeting on a regular basis have rituals, patterns, jargon, and a shared sense of history. These elements are key things that can play an instrumental role in someone becoming a "part of the mix."
- Finally, and maybe most importantly, we must understand the cultural power of the gatekeepers who create a segue for newcomers to enter existing communities. By using social influence theory these “gatekeepers” share their value with the newcomer, and, in a sense, endorse them to the full group. All of us have experienced gatekeepers - people in our life who have welcomed us, and shown us the ropes when we entered a new community or group.
All of these actions demand a new framework for human services in and of themselves, and we should become students of this information. Suffice it to say, that the single most important action any program or service that purports to serve people with disabilities must do is to focus actions on having people build more social capital.
Over the years we have put much time, energy, and money into services for people with disabilities. Yet, the data suggests that we have not significantly moved the needle on community outcomes for the very people we serve. We must be bold enough to face these failures, and to have enough strength to move our actions from our current programs to a focus on social capital and the actions that will build social capital. Until we do this, we will continue to fail the very people that we serve.
Posted with the permision of HDI Publishers and the North American Brain Injury Society. This article is from Brain Injury Professsional Volume 12, Number 1. If you would be interested in receiving Brain Injury Professional, please contact Megan Bell at email@example.com.