Last month, HHS Secretary Kathleen Sibelius announced the merging of the offices for Aging, Disability, and Developmental Disabilites, to form one new agency. This “Administration for Community Living” is designed, in the Secretary’s words, “to help ensure that the supports people with disabilities and seniors need to live in the community are accessible.” She goes on to say that the term “support” includes not only health care, but also appropriate housing, employment, education, meaningful relationships, and social participation.”
Much of the description is encouraging, and the efforts of organizations like The Eden Alternative™ to change the culture of aging, both in nursing homes and the community, seem well-aligned. One advantage of the alliance of aging with disability agencies is that it may encourage a broader view of the capabilities of people with dementia or age-related disorders to be included in meaningful ways. The comments about social participation for elders, with or without dementia, are most welcome.
At the same time, I have some misgivings. The concept has many positive features, but it’s tricky terrain to navigate in light of our history of aging in America, and things could easily go the wrong way.
First, the pairing of aging with disability may enhance our tendency to see aging as decline, and further medicalize this stage of life for all elders. Along with that “declinist” view come all the trappings of disempowerment and stigmatization that have led us to where we are today.
Second, full social participation is a great concept, but goes strongly against what our society has done for the past several decades. Is this a feel-good statement, or are we ready to pursue this in an honest manner? Are we ready to bring elders to the tables of our communities–even if they don’t have a job title or position power, even if they live with some forgetfulness–and truly listen to what they have to say?
The third issue is a larger one that I explored during my time away with my friend Emi Kiyota, which I’ll be addressing in future posts as well. That is the idea that aging has become a commodity in our society. Older people are seen primarily as consumers of services that are designed by others, for them. An entire industry has been built around this and in doing so, has marginalized elders and repositioned them as needing care and services, creating excess disability.
A prime example of this is the way in which we have sunk untold millions of dollars into senior living communities, rather than redesigning neighborhoods to be more accessible and inclusive. Are we ready to reverse this trend to create true community integration?
Lastly, Secretary Sibelius’ opening statement said (with my emphasis): “All Americans–including people with disabilities and seniors–should be able to live at home with the supports they need, participating in communities that value their contributions–rather than in nursing homes or other instituions.” Strong words. But does this mean aging in community, or aging in place?
Is there true community participation and reciprocity, where others will “value their contributions”, or is this simply housing that becomes a de facto “separate but equal” situation, due to a lack of accessibility for all? Will there be community gathering places that are truly multi-generational, or will the elders only have a “senior center” nearby for their use? Will the elders be consulted and engaged for their wisdom and experience, or will they simply be served by the other generations? One solution is affordable for society and empowering for elders–the other is neither.
(Parenthetically, I gave two talks last week at local community centers. Both had a “Senior Citizen Room”. That is not inclusion.)
This is the time to raise these issues, and this new agency will hopefully spur much more discussion of these topics. Our aging demographics demand it.