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Respite care: an opportunity for the religious community.

RESPITE CARE: An Opportunity for the Religious Community

Respite care services for families are ripe for new and effective partnerships between secular service systems and the religious community. There is a growing variety of respite care services, most using paid providers. Many of the programs are excellent. However, most respite is still provided by family, friends and other kinds of informal arrangements. One reason is lack of services, but others have to do with family trust, preference and a reluctance to use agency services.

In addition, it is often difficult to find respite services or to keep such services after the family uses them. Also, it is difficult to determine fair payment or to provide payment on a continuing basis.

The basic call for cooperation between the religious and secular service "worlds" comes from the needs and gifts of the families and persons with disabilities. The separation of service and ministry worlds does little for families who have to integrate, organize and cope with the variety (or lack) of services available to them. Respite care can tap historical strengths of the religious community in ways that "ministers unto" families, persons with disabilities and the religious community itself.

A RELIGIOUS PERSPECTIVE

An increased, intentional involvement of the religious community in respite care comes from a variety of perspectives, issues and opportunities. These include a Biblical foundation, church history, current programs, pastoral/spiritual care with families, evangelism or outreach and the promise for whole community involvement in exploring the fundamental, spiritual and theological questions involved.

The Biblical foundation for a "break for the caregiver" -- a respite -- appears as early as the divine model and imperative of using the seventh day, Sabbath, as a rest from the ongoing work of creation and caring for creation. Some of the most treasured and familiar Biblical passages involve images of respite. "He makes me to lie down in green pasture, He leads me beside the still waters, He restores my soul..." (Psalm 23).

The dual call of word and action continues in the New Testament. Jesus "went apart" for short periods of rest and renewal. The words so often quoted at funerals also have to do with easing the burdens of chronic care: "Come to me, all you labor and are overburden, and I will give you rest." In the New Testament and stories and imagery of the early church, it is of a body of believers who care for one another as extended family in the "body of Christ."

Both churches and synagogues have a history as being places of refuge and sanctuary. The understanding of hospice as being a "rest place for the weary" has profound roots in religious structures and history. The need for retreat and renewal has always involved matters of body and spirit.

In much of modern church programming, respite for families -- such as preschool programs, "Mother's Day Out," summer camps, and other retreat and renewal programs -- is often seen as a primary or secondary benefit. These programs provide secondary respite for families and children without disabilities, giving parents and children a chance to be away from one other while children are in the company of caring others. These benefits are often not available for parents of children with disabilities.

JUST INCLUDE US

When we in ministry say that the need most heard from families and parents is "Just include us in what is already going on," we are saying the same thing. "Secondary respite" is most obvious in its absence, as when the mother of a child with learning disabilities reported to me her experience of being asked to withdraw her child from Sunday school (two weeks before Christmas). He could have stayed if the parents had provided supervision. But, as the mother stated to me, "What other 14-year-old would want his parents in there as well?" The message was certainly one of "no room in this inn."

Hopefully, the combination of a Biblical blessing, examples from church history and current programming for "normal" persons in the religious community will add up to a "divine" sanction for families who have children with disabilities to feel respite is "okay" and, in fact, "normal."

The potential of respite which is provided through a congregation or the religious community to "touch" both issues above -- that of feeling an "entitlement," "sanction," or "blessing" for respite and to trust others with respite -- is perhaps obvious. The blessing from Biblical and religious history is certainly there, as well as "normal" expectations we have about religious programs.

The stigma of appearing weak or inadequate by turning to agencies for support appears somewhat different in the religious community, where there are centuries of tradition and sanction for turning to one's church or synagogue, or "receiving from." And for many families, their church or synagogue, or religiously-based program, is an organization that is trusted because it is better known and has a long history of caring.

One modern dilemma for parents is akin to the historical extremes of images about persons with disabilities, i.e., that of being either "demons" or "eternal children." Somtimes parents seem to take on total responsibility for all of their child's behavior and care, and become socially isolated, feeling like "scapegoats." To some, such parents are the "heroes" to others who say "How do you all do it?" Both stereotypes isolate. The provision of respite care through the religious community has the potential of profound pastoral and spiritual care that will help break through that paradox. If we cringe when we hear a parent say "this is just the cross I have to bear," that may in fact reflect their experience and their isolation.

The potential and real benefits of respite care ministries within congregations or by the religious community are not just for the families of persons with disabilities and the persons with disabilities. Ministry, giving and receiving, is a two-way street. It is an area of ministry that has great potential in the areas of outreach (or evangelism), congregational care as a whole and in spirituality.

First, respite care offers a wonderful opportunity for lay ministry. It asks persons to tap gifts that they may have already used, such as parenting and care-giving, and use them in a new way that may at first seem frightening. But the promise of using normal gifts provides a way of moving away from an over-professionalization of caring and giving. Also, for professionals in developmental disabilities, it may provide the opportunity for them to use their skills in a faith context.

The challenge and promise of respite care as a service to members of a congregation or as outreach is also that it is a direct, concrete way to put one's faith into action. It offers a way to "embody," or "incarnate" the words of care and compassion. As such, it inherits the spiritual challenge and power of relatively simple acts, that of giving a "cup of water in my name."

Respite care also offers a challenge across the rainbow of religious persuasions, from liberal to conservative or fundamentalist churches. The challenge becomes how to match one's words with action and direct physical help. Yet the other side of the challenge is the opportunity to do something out of one's faith, the recognition of one's capability to make a difference in someone else's life. I feel that a real hunger exists to help make a difference in one's own life and in others. Respite care offers one opportunity to do just that.

Many congregations wish they knew how to help a family who has a child with a disability, and end up stymied because of questions that come from the theological and spiritual questions that are raised. Respite care is something that "can be done." Respite care can also be a service to families in the community who have no congregational home. Many of those families have given up on the church, simply because they could not come because of care demands. Others are "shut-in's" or "homebound". The exploration of respite care as an area of ministry then begins to touch many more people than just families who have children with disabilities.

The parallels in needs and ministry with families with elderly parent(s) at home, chronically or mentally ill, are obvious. Many of those primary caregivers have made the decision to provide care in a home environment because of their own sense of faith, duty and love. Thus, the larger question becomes how the religious community, just as it seeks to minister to staff in health care settings, supports these primary caregivers.

Finally, respite care offers individuals and congregations the opportunity to explore and learn from profound spiritual and theological questions. For parents, it may mean dealing with images and expectations about being the "super-mom" or "super-dad". For those involved in respite, The response is often that "we are the ones who are learning." It may offer a way to look at people's dependence on one another.

Respite may also give parents, siblings and persons with disabilities the chance and energy to use their gifts for others, like the mother who accepted respite care so she could play the church organ at services. One reason informal networks break down for families with children with disabilities is they do not have the time or energy to develop reciprocal relationships with neighbors and friends. Others may not ask them to watch their child because of their child with a disability. This isolates families from normal patterns for reciprocity. This represents another reason for the need of intentional respite ministries and services.

Part of the promise of respite care is it can provide the community with new experiences and a greater understanding and acceptance of people with disabilities. Around an identified need, people can begin to know and depend upon one another. Around an assumed weakness or need, new forms of strength are found.

To use another image from Biblical tradition, the promise is "the stones which the builders rejected have become the cornerstone" (Psalm 118) of a new understanding of ourselves as a congregation and community. The renewal of respite can be to help many more people than the ones with the initial, apparent need.

The call for partnership and collaboration between the church and state in respite care services thus comes in response to a variety of factors: (1) the needs of families for more integrated support services; (2) the problems with relying solely on funded respite services; (3) the changing roles of professional services towards training and supporting "generic service providers;" and (4) the rich tradition and potential of the religious community in relation to provision of respite care and opportunities for rest, renewal and relief.

In a society that is reluctant to provide necessary funding for governmental social services, respite challenges the local community to act out the professed values of community self-reliance, family, hospitality, and care for "our own." In a religious world, respite care offers a simple, yet profound way to put faith into action; a way to put people into concrete, specific, limited and manageable ministries that can deeply touch the lives of everyone involved.

The secular professional world can provide some funding, guidance and training; the religious community, the spirit and commitment. For each, cooperative approaches to respite care offer a way to move from "professed" values and ideals to actual care. The common challenge is putting "faith into practice," in ways that may call each world into what feels like new and strange territory and roles, but which may in fact be a recovery of ancient understandings of community, faith and care.

Rev. Bill Gaventa is a consultant/chaplain forGeorgia's Council on Disabilities and also Cobb-Douglas Developmental Services in Georgia. In addition, Gaventa is a lecturer and trainer for advocacy groups, religious organizations and public agencies located throughout the country. He holds a Master of Divinity from Union Theological Seminary in New York. Gaventa lives in Tucker, Georgia.
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Title Annotation:includes related information
Author:Gaventa, Bill
Publication:The Exceptional Parent
Date:Jun 1, 1990
Words:1989
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