11. Valued Social Roles
Participation
Valued
Responsibility Servitude Social Role
without freedom.
Choice
No freedom, and
no responsibility.
Institutionalization
12. Social Roles for People w/Disabilities
Participation
Valued
Responsibility Servitude Social Role
without freedom.
Choice Freedom without
responsibility.
No freedom, and
no responsibility.
Institutionalization Paternalism
13. Social Capital is
the currency of Valued Social Roles
Or…thought about another way…
Choice : Trust
Participation : Reciprocity
18. Why Does This Matter?
Because Medicare &
Medicaid will not be able to
keep up with the growing
demand for services to
people with disabilities…
75,000,000
60,000,000
…and there wouldn’t be 45,000,000
enough service providers in
30,000,000
the labor force, even if we
could afford to pay them. 15,000,000
2000 2005 2010 2015 2020 2025 2030
Source: U.S. Census Bureau, Population Division, Interim State Population Projections, 2005
Females aged 25-44 Individuals 65 and older
20. Because if you have social capital…
If you are connected to natural supports;
If you have intimacy;
If you participate in the life of the community;
If you have people you trust;
If you are respected as a person;
If you are a member of the community…
…it wouldn’t matter where you live.
Editor's Notes
Read title and introduce self
Define the three terms, focusing on the first two. Financial Capital; Cultural Capital; and…
Define social capital and give an example. Refer to early references to social capital (Tocqueville). Social Capital can be defined as the resource that exists within our relationships.
Social Capital depends upon two essential features—trust and reciprocity—it is not based upon any binding contract, other than mutual contribution.
All people living in the community have some amount of social capital—it is the currency of community. However, people living on the margins have less. No minority—in terms of work, education and relationships—is more on the margins than people with disabilities.
Recognizing this, the effort over the past 50 years has been to “demarginalize” people with disabilities by moving them out of services that exist on the periphery of society into community based services, which are located in communities. There is another word for this…
Deinstitutionalization started in the 50s and 60s and is still going on today and began in response to atrocious conditions at state hospitals and developmental centers. This is Rosewood Center in Owings Mills, MD.
In fairness, those hospitals were not originally designed to support people with severe disabilities, but were rather self-contained communities serving people with relatively minor disabilities by today’s standards.
As people moved out of institutions, they typically transitioned into community-based group homes, which may have had anywhere from six to 15 people living in them. Today, group homes usually have no more than six persons residing there, and the trend is towards 3-4 bed homes. But something came with them…
Shifting gears a little bit, I want to talk about a concept called social role valorization, which basically means having valued roles in the community. Valued social roles exist at the confluence of choice and participation.
Participation with choice is servitude. Having neither freedom of choice, nor any expectation of participation is institutionalization.
When deinstitutionalization happened, and happens, people with disabilities most often move to the adjacent quadrant of paternalism, instead of the opposite quadrant of valued social roles. This has implications for social capital, because…
Valued social roles are the context in which social capital is created. Choice is to trust as Participation is to Reciprocity. We trust people to make their own choices—they engage voluntarily; and we have the expectation for participation—that contribution will be reciprocated. There is another word for this—membership.
One is the institutional mindset, which came with people with disabilities when services were relocated to community. Effectively, creating mini-institutions all over the country.
In addition, the service structure itself is an obstacle, because it requires services be provided to a person only. This fee-for-service model wraps people in services, which is not natural to the way people live and creates primary relationships among paid staff.
The net result of this is when agencies step in, communities step back. Location in the community does not create membership in the community, anymore than being under my car while in my garage makes me a mechanic. Only a member of the community can broker membership. The fact that services are located in the community is irrelevant.
People with disabilities deserve to live the same full lives that all people do—and that means having social capital, which is key to being a member of the community, which is in turn key to a host of other real-life outcomes. We all want to be healthy, happy and to have a long life. Research demonstrates that increased social capital brings increases in all three.
Because financial capital is limited. Entitlements will become insolvent in the next 20 years, and there won’t be enough service providers to support people with disabilities, even if there was the financial capital to pay them.
Because when any group is marginalized, the entire community is diminished. Social capital is an untapped resource—especially for people with disabilities, who have so much capacity to increase it.
Fundamentally, services to people with disabilities can never provide membership, regardless of the location of the service. Only communities can do that.
