Hidden In Plain Sight

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Hidden In Plain Sight

• Understanding and Addressing Spirituality in
  Supports and Services

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My Friend Charlie Nick Hajdu, Jubilee
Association of Maryland, 2005

•  
• He is my friend I am his friend
• I help him out He helps me to learn
• I help him to learn He helps me to grow
• I help him to grow He teaches me to accept

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His struggle Is my struggle His vulnerability
Leads to my respect My respect Leads him to
trust His trust Leads to my devotion  
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His availability Feeds my desire to be needed I
keep his secrets He keeps mine      We have an
arrangement His lack of self-consciousness Leads
to my tolerance His constant need for
stimulation Leads to my patience His discomfort
Sharpens my sensitivity His unhappiness Is my
challenge His presence Eases my isolation His
loyalty Leads to my loyalty      Which leads to
mutual appreciation  
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His brokenness Makes me accept my own
brokenness      Which leads to healing His
humanity Leads to personal connection His
steadfastness Centers me   His smile Is my
reward His joy Lifts my spirits His happiness
Gives me a sense of purpose His struggles Expose
my anxieties      Which tests me      Then
strengthens me      And in turn bolsters my
faith  
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In guiding I am guided In helping I am
helped In teaching I am taught   In his
laughter There is joy In that joy There is
energy In that energy There is spirit In that
spirit There is grace   In his eyes There is a
glow In that glow Is his soul In his soul There
is God And in God There is peace
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Understandings of Spirituality

• Two fold definition
• Experience with/of sacred and holy
• Ways that we make meaning, values, purpose

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Spirituality as Connection

• With Self
• With Others
• With Holy/God
• With Time
• With Place

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Fundamental Spiritual Questions

• Identity Who am I?
• Purpose. Why am I? What is my role and function
  in life? Why am I here?
• Community Who do I belong to?
• Why pain or suffering or death?

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Disability Thinking about it Universally

• Religions Try to Answer Four Questions
• Disability what is it? How is it defined? How
  does it define me?
• Why did it happen?
• How am I to respond to it?
• How are others called to respond?

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Theological Questions Right in Front of You

• What it means to be person?
• What it says about God?
• What it says about Gods people church,
  congregation, people?
• How we understand suffering and the difference
  between the Why? of life purpose and the Why?
  of suffering.

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Spiritual Questions at the Heart of our Values in
D.D. Services

• Independence Who am I?
• Productivity Why am I?
• Integration Whose am I? underneath the
  Where am I? Under Where do I belong? is
• Who do I belong to?
• Self Determination How can I shape my life?

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Western Expressions of Those Values and Answers

• Values as Expression of what is Sacred for Us and
  Where We Have Found Meaning
• Independence Who Am I? Self made, Own Person
• Productivity Why Am I? Job, Vocation, Make a
  Difference
• Integration Community Inclusion Presence to
  Membership
• Self Determination Choices, Power, Control

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Public Policy and SpiritualityUneasy Partners

• Spirituality as private matter, not public
• Separation of church and state
• Science vs. religion
• Equation of faith with reason

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Professional Practice and Spirituality

• Understanding of professional role and identity
• Separation of values and belief from public role
• Pendulum away from proselytizing
• Bewildering array of practices
• Fear of its power

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Reframing/Redeeming the Role of Professional

• Recovering Professional
• Value clear, not value free
• Ideology of program, process, and philosophy
• Honesty and mutuality in relationships

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Recovering the Profess in Professional

• Capacity to journey with others loyalty, fealty
• Capacity to deal with the tough ethical and
  spiritual questions that disability so starkly
  raises for us
• Capacity to recognize and celebrate those holy
  moments and miracles of accomplishment and growth
• Capacity to give thanks for discovery, meaning,
  and gift to us
• Capacity to sacrifice, give up, for sake of others

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Narratives of Illness and Disability

• Which story are you/we part of?
• Recovery Fix, cure, heal
• Chaos Despair, destroyer of self and values
• Journey
• Arthur Frank, The Wounded Storyteller

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Capacity for Illusion and Delusion

• Being a parent confronts you with an ordered,
  scientific world (with a bewildering array of
  services) while presenting you with all the chaos
  that real life has to offer Ellen Cook

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Rationales for Invoking and Including Spirituality

• Tapping the power of the sacred in peoples lives
• Ways that people find meaning and cope
• Cultural competency/cultural humility
• Self Determination
• Quality of Life
• Spirituality of staff
• Soul of the organization

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Congregational Treasures

• Shared spiritual expression
• Opportunity to learn
• Socializationand friends
• Recreation
• A place to serve and give
• Networking
• Example Clarence, in Planning for Life

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Spirituality at/in Life Span Transitions

• Spiritual supports at diagnosis
• Opportunity for inclusion
• Rites of passage as building community
• Transition and employment The power of networks
• Adult Services A place to contribute, Faith
  community in health issues?
• Ethical dilemmas Involve clergy

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Aging and End of Life

• Policies and Practices in Handling Grief
• Remembering and Celebrating Relationships
• Plan Ahead..Roles in building supports, Loss
  team, clergy and hospice who can respond.
• Loss Assessments Jeffrey Kauffman
• Guidebook on Helping Adults with Mental
  Retardation Mourn

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Remembering/Revisioning

• Remember is more than paying attention.
• Remember Connections with past and future.
• Re-Member Connecting to communities of time,
  past, present, and future.
• Re-menting Holding memories for others
• Re-Vision Opportunity for choice and community
  as well as challenge

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Opportunity to Revision

• Independence Who am I? to Who have I been?
• Productivity Why am I? to What difference can
  I make now, and have I made?
• Inclusion Whose am I? to Who remembers me?
  Whose have I been?

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Unique Tasks of Aging

• Reaffirm connections to communities of which we
  have been a part.
• Blessinghow have you been that, done that, and
  give that?
• Honor in aging, dignity, respect, appreciation
• Maintain and grow faith in face of loss
• Reconciliation of discordant experiences, e.g.,
  letting go, reunion, forgiving
• -
  The Challenges of Aging Retrieving Spiritual
  Traditions.
• The Park Ridge Center.

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Challenges to People with Disabilities and People
who are Aging and Caregivers

• Who is their community? Family, work, staff,
  other consumers?
• Where do they have, receive, and give the
  blessing?
• How are their journeys and survival stories
  honored and respected?
• Is grief/faith practice honored and supported?
• Can we look back with them, and support
  remembering, reconciliation, reunion?

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So how do we go about it, i.e., learn to work
out our prayers

• I wanted to ask God why He does not do something
  about the poverty, wars, homelessness, and
  injustice I see around me
• Why dont you?
• I was afraid He would ask me the same question

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Policies

• Is it part of agency policy in terms of practice?
• Freedom of religion, but no support to help it
  happen AAIDD and The Arc Policy Statement on
  Religious Freedom
• Make it explicit, not implicit or ignored
• Focus groups with recipients and families
• Spiritual supports team, including loss/grief

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Policies

• Use natural support systems whenever you can to
  meet the religious/spiritual needs of people who
  live in the group home.
• Religious practices are allowable in the home as
  long as no one is coerced to participate and no
  single form of expression is favored over
  another.
• Tom Hoeksema, Protecting Religious Freedom, The
  Caregivers Responsibility

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Spiritual Assessments

• Seven by Seven Model George Fitchett
• Glenda Prins Spiritual strengths and experiences
• FICA. Christine Pulchalski
• A Space to Listen Project. What About Faith?
  John Swinton, UK
• Use development as opportunity for bridge
  building and collaboration with the very
  communities you hope will help you.

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Seven by Seven Spiritual Assessment-George
Fitchett

• HOLISTIC ASSESSMENT
• Biological (Medical) Dimension
• Psychological Dimension
• Family Systems Dimension
• Psycho-Social Dimension
• Ethnic/Racial/Cultural Dimension
• Social Issues Dimension
• Spiritual Dimension

• SPIRITUAL ASSESSMENT
• Belief and Meaning
• Vocation and Obligations
• Experience and Emotion
• Courage and Growth
• Ritual and Practice
• Community
• Authority and Guidance

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FICA

• Faith Preference, choice, tradition, identity
• Influence and Importance
• How important is it? How does it influence your
  life?
• Communal Expression
• What form does it take? Would you like it to?
• Assistance How can I/we help you with this?
• Christine Puchalski, M.D.
• GWISH, George Washington Institute on
  Spirituality and Health

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Finding Out Choice, Preference, and Tradition

• What is/was their personal or family spiritual
  tradition?
• What is it now?
• What are they doing?
• What would they like to do?
• How can you/we help that to happen?

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Questions You Could Ask

• Has he/she expressed interest in faith or
  religion?
• Does he/she belong to a particular one?
• Name of place, contacts there?
• What do they do there? Would they like to do
  more?
• Is there an action plan for this?

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Questions You Could Ask (cont.)

• Are there other ways he/she observes their
  religion or spirituality?
• Loss assessment? Jeffrey Kauffmans book.
• Festivals and special occasions?
• Are there other things he/she would like to do?
• What does the family think?

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Planning Person Centered

• Explore it
• What is important to/important for?
• Preferences, choices, and dreams
• Rituals of daily, weekly, and yearly life
• Invite others in (clergy, congregation) to be
  part of the planning circle)
• Clergy and/or congregation members to IHPs

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Support It

• Staff time
• Revising staff roles to bridger, teacher, guide
• Opportunity for collaboration and community
  building
• Celebrate it
• Organize it. Roles and programs that bridge,
  network, support
• e.g. MA Bridges to Faith Model, faith companions

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Getting to the ___ on Time

• Practical issues.
• Supporting Direct Support Professionals
• Where are the real barriers?
• Sharing responsibility..
• Moving attendance to membership.

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Train It

• Staff training
• Attitudes impacted by your own tradition
• Role Guide, facilitator, vs proselytizer
• Policies
• Skills in connecting people with faith
  communities
• Opportunities for staff to reflect Story,
  symbol, song, culture
• Community building times, action/reflection
  learning

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Train It

• Consumers and service receivers
• Focus groups
• Policy making
• Use community help
• Opportunities for shopping, informed choice,
  and practice. Religious education is not just a
  cognitive activity

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Key Training Goals

• Persons with developmental disabilities are
  capable of religious or spiritual expression,
  just like anyone else.
• People with developmental disabilities have
  preferences in the spiritual and religious
  dimensions of their lives as they do in others,
  and must be allowed and enabled to make choices.
• A public, non-sectarian home must protect the
  freedoms of everyone and coerce no one.

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Key Training Goals (cont.)

• Staff rights, freedoms, and choices for their own
  lives are subservient to the rights, freedoms,
  and choices of those for whom they provide care.
  Consumer needs come first.
• Religious practices are allowable as long as no
  one is coerced and no single expression is given
  favored status.
• Connecting people with congregations or other
  spiritual communities is an excellent way to meet
  spiritual needs and build community membership.
• -Tom Hoeksema

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Train It

• Families
• Talk with them about faith stories and dreams.
• Offer to be the asker and helper
• Be prepared for powerful stories
• Clergy, spiritual leaders, and congregations
• Future Field education, clergy, CPE

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Community Education and Outreach

• Revised staff roles Embracing Paradoxes
• Do, Be, Do - Belief to belonging to belief to
  action
• Services on needs, community on gifts
• Come to me vs. give it away Caregiver to
  coach
• Professional knowledge and professional
  ignorance Use what we dont know.
• Everyone a community builder

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Community Building Roles

• Consult Plan with, not for
• Collaborate It takes a villageWhose are they?
• Compete If they can, how come we cant?
• Coach Alongside consumer, congregation
• Your role, within your congregation as applicable
  or in helping others?

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Coaching Roles

• Vision Art, symbol. Belief, image, poetry,
  values. What is their vision, not yours?
• Storyteller. Share observations and experiences.
• Guide You are inviting people into an inward
  and outward journey
• Celebrant and Blesser Your power to help others
  see the significance of their care

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Guiding Lines Faith Based Strategies in
Community Building

• Setting the table
• The last shall be first. Reverse the questions
• The deaf shall hear. Reverse the answers
• Who do you say that I am? Be careful with words.
• Joshua committee. One person at a time.

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Guiding Lines (continued)

• Jericho mentality power of persistent
  celebration
• Fish and loaves approach to planning finding
  abundance in community
• Believe in the callfor everyone. Gods hooks are
  everywhere
• What is most critical is invisible to the eye
• Watch out for idolatry, dogma, and ideology. Use
  the talents you have. Let the light shine. Just
  do it

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You may find

• Lack of personal experience
• Lack of training, including clergy connected to
  agency
• Questions about responsibility? Whose are they?
• Issues of capacity and vision. Whos disabled?
• Burning bushes theological questions and
  challenges

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Be graceful and prophesy

• It takes time. Remember your own story
• Take fear and feelings seriously. Feedback loops
• From fear to pity to anger to love.
• Ministries of prepositions outside, for,
  with, by
• Focus on hospitality and community and gifts

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Resources and Opportunities Its a Gold Mine

• Go where there are
• Find out what is happening already
• Videos and adult education
• Believing, Belonging, Becoming Wisconsin DD
  Council
• Ten Commandments for Communicating with People
  with Disabilities
• Program Development Associates
• Service and mission beyond designated
  receivers Find them a job
• Youth and children

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Resources and Opportunities (continued)

• Faith group networks. What does Rome say?
• Your contribution as professional to faith based
  disability networks?
• Accessible Congregations Campaign NOD
• Collaborative training
• Find and celebrate the storiesyour agency
  newsletter?
• Not just about people with disabilities Connect
  with all forms of ministry

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Get Connected

• Someone in agency connect into AAIDD Religion and
  Spirituality Division and Newsletter
• Write and research. Your stories?
• Journal of Religion, Disability, and Health
• Personal/agency subscription.
• Dimensions of Faith Resource Guide on line in pdf
  at The Boggs Center.
• http//rwjms.umdnj.edu/boggscenter/

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Brand New Resources

• Including People with Disabilities in Faith
  Communities A Guide for Service Providers,
  Families, and Congregations. Erik Carter. First
  book from Brookes Publishing Company on spiritual
  supports.
• Themed issues from the Journal of Religion,
  Disability, and Health.
• Autism and Your Church. Barbara Newman
• Watch for Praying with Lior (www.prayingwithlior
  .com)

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In development

• Themed issues of the Journal on
• Communion stories
• People with disabilities the other victims of
  war
• Inclusive religious education
• Ethical and theological issues around persistent
  vegetative state.

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Its About All of Us Where there is no vision,
the people perish!

• Themes Emerging from Inclusive Ministries and
  Spiritual Supports
• Hospitality to the Stranger
• Re-membering the Body and healing of the memories
• Restoring the Sanctuary
• Redeeming the Gifts

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Visions (continued)

• Reversing the call
• Recovering our senses
• Rekindling the spirit
• Reframing service, support, and profession

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The great paradox of ministry, therefore, is that
we minister above all with our weakness, a
weakness that invites us to receive from those to
whom we go. The more in touch we are with our own
need for healing and salvation, the more open we
are to receive in gratitude what others have to
offer us. The true skill of ministry is to help
fearful and often oppressed men and women become
aware of their own gifts, by receiving them in
gratitude. In a sense, ministry becomes the skill
of active dependency willing to be dependent on
what others have to give but often do not realize
they have. Henri Nouwen, Gracias
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Shalom

• Contact Information for AAIDD Religion and
  Spirituality Division and Journal
• of Religion, Disability, and Health
• Rev. Bill Gaventa
• The Boggs Center
• P.O. Box 2688
• New Brunswick, New Jersey 08903
• 732-235-9304
• (bill.gaventa_at_umdnj.edu)