Impact Feature Issue on Supporting Wellness for Adults with Intellectual and Developmental Disabilities

Dealing with aging, death, grief, and end-of-life issues with people with intellectual disabilities is a growing challenge in services and supports. It is a challenge brought on, in some ways, by success in terms of effective health supports in that people with intellectual disabilities are living longer into old age. But the challenges are many:

• Dealing with decline and death seems like the antithesis to the values of growth and development, such as independence, productivity, inclusion and self-determination, that are at the core of so many services and supports.

Dealing with decline and death seems like the antithesis to the values of growth and development, such as independence, productivity, inclusion, and self-determination.

• Loss of ability and decline to death may seem to staff and caregivers like a “double injustice,” adding the “Why?” of death to the “Why” of disability in the first place. For younger staff without personal life experience with death and loss, this can be even harder; and for all staff and carers, it may feel like “failure” in their responsibility. That can be compounded in systems where normal deaths get investigated as if they were a “critical incident” or evidence of abuse or neglect.
• As in any relational system, intense feelings about responsibility and care can be part of the mix between people with disabilities, their friends, families or relatives, and professional caregivers.
• Until recently, there has been little attention to the ways that people with intellectual disabilities experience and process grief and loss, a paradox given the amount of loss that they have to deal with in so many areas of their life, including staff and caregiver turnover. People worry about their capacity “to understand,” yet rather than taking more time and attention to help that happen, the pressure is to move on quickly. There is pressure in agencies to fill the empty beds, to get back to the programs and plans, rather than recognizing the power of relationships.

Those same challenges can present opportunities to do the following:

• Re-vision the end of life not as decline but as journey, and to give people as much choice and control as possible in the final stages of life.
• Focus on the importance of relationships, and remember connections to the past, present, and future relationships. “Remember” is about connections with important relationships, and “re-membering” can be about helping people get connected again to relationships and communities of which they have been members.
• Build new communities of caregiving and meaning around a person in the latter stages of life.
• Pay attention to the importance of spirituality in people’s lives, what is most important to them, the cultural and religious rituals that are part of old age and death, and the opportunities to participate in and practice spiritual connections.
• Re-vision the core values of independence, moving from “Who am I?” to “Who have I been?”; of productivity, moving from “Why am I” to “What difference have I made with my life?”; and of inclusion, moving from “Whose am I?” to “Whose have I been? Who will remember me, and how will I be remembered?”.

In a resource manual called, The Challenges of Aging: Retrieving Spiritual Traditions in the Long-Term Care of the Elderly, the Park Ridge Center in Chicago identified five tasks of aging common to all major spiritual traditions (Park Ridge Center, 1999):

• Reaffirm covenant obligations to community.
• Blessing…how have you been a blessing and given your blessing?
• Honor, respect and appreciation for aging and the elder.Maintaining and growing faith in face of loss.
• Reconciliation of discordant experiences (e.g., letting go, reunion, forgiving).

As we think about adapting those tasks to and with adults with intellectual disabilities, the remainder of this article outlines some ways we might do so.

Reaffirming Covenant Obligations to Community

Of what communities has someone been a part? What has been important to them about those communities? What might they want to do in those communities? So, for example, would people like to revisit places they have lived in their lives? Would they find it meaningful to make a photo album of places and people that have been important to them? Would they like to volunteer somewhere? If they have never had the chance to join a desired faith community, could this now happen? For example, there are powerful stories in the state where I live, New Jersey, of people with intellectual disabilities being able to have the bar or bat mitzvah they never had, or having the chance to be confirmed or baptized. Those relationships also need to be built to avoid the crisis of “who to call?” when someone in residential services is suddenly hospitalized with life-threatening illnesses or dies. Clergy and spiritual communities can respond, but that response is so much better if a person is known to a given faith community.

Can we help people participate in rituals of loss and mourning, or develop new rituals in service systems where grief and loss have often been unacknowledged and unrecognized?

Giving and Receiving Blessing

Service providers have gotten better at identifying the key strengths and gifts of individuals with intellectual disabilities as well as their needs or deficits. This is a time to focus on those gifts and strengths. How can we celebrate and honor them for those gifts? Could they give them to others, such as by writing or telling their life stories to younger professionals or others? Could we help individuals think about what they want others to have when they die (i.e., make a will, and think about who would like valued possessions as a keepsake, something to remember them by)? One chaplain at a small residential facility started a practice of identifying key strengths in each person, and then developing a “Certificate of Appreciation” for that person and their gifts that was presented to each individual and their family at the annual plan review. Not only did those certificates start ending up in frames and on their walls, but they changed the ways that others saw the people with whom they worked.

Restoring Honor to Aging

Many cultures see the elderly as those to be honored, in stark contrast to some modern culture that sees aging as curse. As people with intellectual disabilities age, how might professionals and caregivers honor them? We could ask for their blessing, in a variety of ways. We can help turn records and charts into life stories. One agency is doing just that with Power Point presentations and scrapbooks that are turning a team of consumers into speakers and presenters at workshops. We can re-vision “consumers” as “survivors and veterans” of endlessly changing service systems, and honor them as we would any veterans. We can also do so by restoring mutuality to the relationship between professional and “client” by finding ways to tell and thank them for what “they” have meant to us, and how they have helped us. Professionals all know people with intellectual disabilities who touch deep parts of their own lives and values, and have provided part of their own sense of calling and vocation. We need to share that appreciation with others as they age, as we would with other elders who have been our teachers or mentors.

Maintaining Faith in the Face of Loss

How do we help people prepare for and deal with the losses they have – losses of relationships and losses of their own health or vitality? Can we help people participate in rituals of loss and mourning, or develop new ones in service systems where grief and loss have often been unacknowledged and unrecognized? Many elderly people get more involved with religious communities. Can we help that happen, and build supports that will be there at the end of life? And, can we find new and creative ways to help people express their own grief and develop their own form of understanding; for example, the book Am I Going to Die? in the Books Beyond Words series (www.rcpsych.ac.uk/bbw ) is one creative way to help people understand both facts and feelings, loss and mourning.

Reconciliation

Are there old relationships that need to be renewed as people get older? Or connections with families, old friends, or former staff that need to be “re-membered?” For the rest of us, “reunions” become more important in old age. Can we work with people with intellectual disabilities to see if there are people they want to see, or need to see? Many old institutions where people lived were terrible places and times; so is war. But people who have survived and gone their separate ways to better lives often choose and seek the opportunity to have reunions, or to revisit those places and relationships that shaped their lives.

Summary

Support and service agencies, families and other caregivers, and individuals can develop their own creative ways to address these tasks of aging and end-of-life planning with people who have intellectual disabilities. The challenges can indeed become opportunities.

• Park Ridge Center. (1999). The Challenges of Aging: Retrieving Spiritual Traditions in the Long-term Care of the Elderly. Chicago: Park Ridge Center for the Study of Health, Faith and Ethics.