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Introduction
Figuratively speaking, the heart and mind are held together by
the body. Similarly, a small group of concerned people brings the
heart and mind together within a system. This system can then broker
solutions for the benefit of special-needs patients with complex
problems. These solutions intend to join families and the community.
Links can be found under our Other Resources menu.
Like the body having many organs and systems, the team’s
goal is to join pieces into a working system for the family. This
care system is formed from a team of helpers. This team can be created
from within the family, extended family, and, if needed, outside
the family —including friends, pastors, bishops, mentors and
teachers. Two or more people working together enable family members
to connect and take powerful action. The two-way communication process
in teamwork builds resiliency and adds a sense of direction.
Helping teams can offer some instructive feedback in honest non-confrontational
ways. But also, we have found that when a group acts as a positive
witness, or audience, a positive response can be produced. This
occurs when a family tells stories about how they survived tough
times and bounced back. The team can act as a mirror, with gentle
queries about discrepancies between family goals and current realities.
See Guide
to Conferencing Handout.
Another purpose in gathering people together is to help the family
formulate its needs and goals and possibly to construct a Family
Health Plan. This mutually devised plan contains co-constructed
goals. These goals are organized and prioritized into a systematic
strategy. This concrete assistance to families maximizes child-environment
transactions or positive matching of the child with the environment,
and provides support and learning opportunities from which parents
later solve many more problems for themselves. Parents and children
are given the task of choosing the goals they want, talking about
making use of their anticipated gains, and making contact with instrumental
people. Feedback emphasizes the parents’ volition and agency.
In this connective tissue, resilience is born and is promoted using
a Family Health
Promotion Concept Plan.
Linking and Reconnecting to Natural
and Community Supports
Creating contexts for change involves coming together in the service
of health and learning. People use methods of coming together as
interpersonal bridges to reciprocal exchange and mutual support.
When being together we see that something bigger is at stake than
our individual selves, we create connections with heartfelt meaning,
direction and purpose. People need each other. We need to connect
in a way that matters to connect and reconnect to husbands, wives,
brothers and sisters, partners, friends, neighborhoods and communities
bringing together our traditions, stories, pasts and future aspirations,
hopes and dreams. (Hallowell, 1999)
The ABLE staff proposes ways to build connections, with such goals
as family unity, child attachment, finding a friend, and forming
allies as discussed in this section. Methods involved in obtaining
these goals are summarized below. These Methods are stated under
the following titles: Listening and Talking, Social Outcomes from
A Sense of Belonging, Connections Buffer Losses, Goodness of Fit
is Relational.
Listening and Talking
With a spirit of connection, we use the knowledge and skills from
Our Practices - Part I under the menu For Professionals, to enhance
communication and exchange ideas and information. Both of these
sections fit together to include active listening, creating a cooperative
atmosphere, and initiating interest and curiosity among each other.
They are most required when several persons get together to talk
with each other. We also reflect back on previous Under the menu
For Professionals - Our Practices - Part I and Our Practices - Part
II for the process and content needed for cross cultural communication
using the various ethnographic, motivational, solution-oriented,
narrative and change-based practices.
Social Outcomes from A Sense
of Belonging
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When referral resources are presented within the fold
of safe connections and community linkages, a more adaptive functioning
of the client, family, and peers can result. The client/family now
begins to experience an anticipation of healing and repair. The
family also may begin to experience increased coping abilities,
a felt sense of internal control and strength, as well as a growing
sense of competence and empowerment. Further experiences are fostered
by these opportunities to come together for shared mastery and interdependence.
Such mutually-felt experiences help buffer the adverse effects of
the client/family’s emotional and physical world, and stimulate
resilience building. These optimal reconnecting moments may be felt
in part during mentorship, friendship building, and the promotion
of such positive activities and events as group recreation, service
projects, and esteem building. Such engagements begin to enhance
mutual attachment, social bonding, and relations between caregiver
and child sometimes by getting the family to simply talk to each
other more often.
Connections Buffer Losses
Shared listening, and the witnessing of family stories are tools
used to help a family move toward health. When there has been a
wrong committed, opportunities are assessed for restitution from
victimization that has occurred through injustice and inequity.
Through a sense of belonging, stigma and feelings of difference,
shame and alienation can be lessened. The family members’
roles and rituals are normalized through emphasizing expected everyday
events. This helps protect, nurture and re-establish rightful ownership
of a family’s preferences and actions. Social and psychological
core needs of trust, power, autonomy, competence, initiative, and
intimacy are also attended by the weft and warp?, and woven into
the fabric of family stories to give origin to personal qualities,
which are the grist for resiliency. In community, the client/family
feels increasingly recognized, accepted, valued, and able to count
on those closest to them.
Positive change, even if just a small step, is seen in a variety
of ways, and may even be manifest by the mere containment or minimization
of the previously-severe and complex family situations. With multi-stories
of client/family reunion may also come the process of resolving
or ameliorating conflicts and frustration over the parent’s
previous perceptions of loss and broken dreams. Intangible or symbolic
losses or threats of separation, stress-laden pain, grief and disenfranchised
mourning are eased through a collective grieving and healing. The
social group may mitigate the hurt and succor the wounds helping
the client/family through mourning the loss of the idealized child
and other losses.
Goodness of Fit is Relational
Family stories, told and retold, can gradually describe
a more congruent match or “goodness of fit" between parents’
expectations and their child's capacities, as well as the family’s
expectations and the community’s responsiveness. The team
continually recognizes that growth and healing are taking place.
Social stories are developed with an appreciation of the strength
and abilities of the child, family and school. This task requires
the team’s unqualified acceptance, positive regard, and heightened
affirmations, resulting in the mirrored sources for the child and
family being heard, seen and felt, so that the family may provide
a more optimal attachment when supported by the multiple supportive
relationships around them. The team strives to convey and instill
hope and positive expectations from new perspectives and meanings
gathered from the social network. It is the renewed dream that is
most likely to foster greater courage and continued healing.
Action Steps Toward
Connections
A. Gathering
the Family Together: (See Family
Global Health and Well-being Scale Form - a
family relationship rating scale).
It is in families where basic relationships generally start. However,
acknowledging that serious problems often develop in families, discussion
follows on utilizing community people and resources that can model
successful meeting formats that families can later use in resolving
problems within their own domains. From the sharing opportunity
in group meetings, families can look forward to applying what they
learned back in their natural settings. (See A
Model for Family Meetings Handout)
B. Attachment
Relations:
A child’s relationship with an adult caregiver might also
be enabled by a social support network allowing special time between
them again. See Enhancing
Family Functioning Handout. This may also be the basis for acquiring
a mentor, big brother/sister or a buddy connection.
C. Building
a Dyad to Help Problem-Solve:
“Two heads are better than one”.Recruit one
or two family members or good friends as you further look for support.
A parent exploring solutions to a problem with a child will be better
managed if the parent doesn’t have to be alone in the task.
Solutions will likely come initially from just talking with another
person. The more that couples can communicate with each other, the
stronger their collective efforts. A grandparent or a church friend
might also be available. Start with a phone call to discuss needs,
ideas and goals. Ask this person if he or she might be willing to
go to a school meeting with you sometime. Parents willing to help
other parents may also be available through such support groups
as the proposed Utah Family-to-Family Networks of DSPD or the Utah
Parent Center. List Serves or protected on line support groups and
chat groups are also accessible. Go to Advocacy
and Support for more information.
D. Gathering More Helping Persons:
A common and recurrent theme from previous parts is that of gathering
all the appropriate people involved in the problem or its solution.
These people may include family members, extended family, friends,
teachers, administrators, a health provider, a psychologist, a social
worker and others as needed. See Family
Support Chart. An alternative to this method might be constructing
a Family or Eco-Genogram. See the Four
Generation Family Genogram Handout in order to show the multiple
relations and how resources configure into these family-community
relationships.
E. Networking:
“When the heart stops beating, the blood no longer carries
oxygen, nutrients and wastes to various body parts, and death
occurs. Even so, when there is little or no communication between
persons, the relationship dies.” Care Coordination is a
form of service that enables parents and medical folks to talk
about chronic and complex health problems and needs allowing multiple
providers to keep the big picture in focus. Here they share in
assessments, communicate needs and progress, and also share in
identifying resources as well as case management. See the Medical
Home School Services Recommendation Form.
Holding A Brief Meeting
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- Getting Ready:
Think about a purpose for the meeting. Who do you want to attend?
We recommend focusing primarily on the people who may have something
to do with the problem, i.e., the problem-organizing team. There
may be additional players who can also offer solutions. Learn
to relax and reduce your tensions at the meeting. If the child
can’t be there, you may want to have some reminder of
him or her on the table and perhaps a short tape of what the
child says is hard for him or what he likes to do. Learn to
negotiate and see the point of view of the others. Remember,
you are learning advocacy skills and may be the only one willing
to stand up for your child. (A good reason for bringing a friend
or other family member to the meetings!)
- Addressing Given Concerns, with
an Outcome Focus: What are the problems? What
are the goals? What are the solutions? Is there a step-by-step
plan? Sometimes problems need solving by means of first understanding
their root causes. A statement of problems can be rewritten
in a positive way and become a goal. The solution-focused approach
is an inductive method that bypasses the more familiar Western
problem-analysis approaches which are deductive, logical and
problem-solving. If that doesn’t work, other solutions
may encourage more progress. See Solution
Focus Handout or see Steps
to Follow in Collaborative Coordination Handout.
- Assignments, Follow-up, Maintenance
and Transition: Notes should include in a written
record the people present, the background situation,
observations, health situations, strengths, concerns and plans
noting who is responsible for carrying out what, and when, and
finally, a date for a follow-up meeting or telephone conference.
Unless accountability is included, goals are not likely to be
obtained. See Family
Health Promotion Plan .
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F. Telephone Conferences:
(Optional) Here, a group of health professionals, such as a physician,
a psychologist, a social worker and a nurse gather around a speakerphone
and discuss problems and solutions with a teacher or group of school
personnel who are also sitting around a speakerphone or other conferencing
tool. Telephone conferences are useful when an essential person
is not otherwise available in person. By this means, shorter
response times are possible and greater flexibility is afforded.
We find this to be a way of connecting through auditory attunement,
but it may require knowing the parties from previous face-to-face
meetings. We try to make these sessions efficient, and focus the
participants toward goal-definition and accountability in a context
of positive regard witnessing what the child-family has made work
for themselves. We also look forward to the time when video-teleconferencing
and video-streaming will be more available and familiar for even
further conference options.
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G. School and Small Group Consultation
or Conferencing:
These are meetings to improve an at risk child’s school experience
as well as provide ways to partner and participate. These joint
efforts develop strategies, and are generally composed of a teacher,
a resource teacher, a counselor, the principal, possibly a health
representative (if not in person, then with information obtained
earlier perhaps by phone), a parent, a parent advocate, and
maybe a school district representative. The child may also be invited
in a way to help him feel comfortable, such as with a friend, a
pet or a favorite item. A School
and Community Conference Form should be completed. This would
include names of those attending, background concerns, medical concerns,
observations, strengths, plans and who will carry them out, and
a follow-up meeting date. Sometimes the health provider will need
to submit his or her input in alternative ways, as mentioned above,
using the Med Home School Evaluation Recommendations
form under Schools and Education in the Medical
Home website. The form offers ample opportunity for communication
so the team may share important information. It also gives instruction
on the best way to make contacts, a description of the medical conditions
and their impact on function, along with other ideas and concerns.
It would be important to achieve two-way communication with the
health provider using alternative ways if necessary, when diagnoses
are multiple and complex.
Guide to Conferencing
Conferencing is a tool available to most any school or other service,
and generally without any additional budgetary costs! Locally, it
is utilized along the Wasatch Front and other parts of Utah in cooperation
with the ABLE Team of the State Health Department. Conferencing
can be a means of acquiring additional information in a multi-disciplinary
setting. For example, parents of a child with an IEP can ask for
a conference meeting which could include providers beyond school
personnel, as a parent has authority to request. This model, generally
conducted in a school setting, offers the following options:
- Challenges, needs and concerns are identified and discussed.
- Members are non-blaming, and promote respect and affirmation
of each participant’s role.
- It facilitates a coping process among those concerned.
- It identifies the balance between the child’s risks and
positive capacities or strengths.
- It offers assistance in containing the challenges.
- It assesses needs and resources.
- It consciously works to limit the negative consequences.
- It delegates interventions that would be difficult for any
one person to accomplish.
Principles and Values Recognized
in School Conferencing:
- Using what is available.
- Recognizing that “There is strength in numbers”.
- Listening to and acknowledging “Family Stories”.
- Bringing together several views.
- Sharing of conversation from partnerships, serving as a catalyst
for change.
- Helping to secure the most accurate perceptions.
- Exploring and expanding choices and decision-making.
- Offering many hands lightening overwhelming and complex work.
New Child and Family Conference
Outcomes:
- From identified strengths, resources and supports, interventions
are developed and carried out.
- Parent/school partnerships and bonding help establish family-school
identity and a sense of belonging for the child.
- Conferences provide ways and means to evoke self-motivation
toward change action, as well as for measuring progress.
- Conferences offer an informal first glimmer of hope and strength
for families and school.
- They also develop and acknowledge stronger family-school voices.
Group Composition:
The criteria used in forming a conference team for a high-risk
student is to informally gather a group of key people already identified
and valued in the life of the child and family. The team is gathered
for the purpose of achieving collaborative understanding and addressing
critical needs. This composition has the makings of a ready and
effective front-line service.
The members are likely affiliated with the school, but need to
include, at a minimum, the nuclear and extended family. The composition
includes both parents and hopefully a supportive friend or relative.
A “problem-defined team” is identified as one composed
of whoever is connected in anyway with the problem. They are invited
to help work on solutions by the parents, and may include members
of other agencies who might be involved in the community, such as
health, social service, juvenile court, mental health, or other).
Finally, the family may also need to request that related service
personnel from the school, such as an occupational therapist, physical
therapist, psychologist, and nurse also come to the meeting.
Group Leadership:
Group leadership for the conference is formed within the meeting
where work is distributed among the members. Such roles as facilitator,
scribe, and timekeeper are established at the beginning of the meeting.
School personnel are likely to serve as consultants.
Group Flexibility:
The group may be generated from already-existing multi-disciplinary
groups in school or in the community such as the Child Study Team,
Child Support or Guidance Teams, a Service Team, or Wrap-Around
Services. Since each high-risk child is unique, the procedures for
preventing, promoting or dealing with his or her crisis and individual
emergencies, as well as unique response time frames, will have to
be determined individually.
Meeting Agenda:
The meetings will usually follow the general outline of the School/Community
Conference Form, which includes the following:
- List of those attending, and their roles.
- Goals of the meeting.
- Strengths surrounding the child and school cultures.
- Concerns and challenges.
- An intervention plan.
- Who will assist in carrying out the various components of the
plan, and when.
- Identification of an appropriate contact person.
- The date of the follow-up meeting.
The notes or report written during the meeting is then copied
and handed to the team members prior to the meetings dispersal as
a visual reminder of the team's transactions, and a backup witness
of collaborative commitment. A formal assessment of the value and
effectiveness of the meeting can be completed by all present using
ABLE's School/Community
Conference Form and Community
Meeting Feedback Short Form and Core
Team Statisfaction Survey Form.
Flexible Conference Representation:
Conference invitees may need flexibility in the way they participate.
For example, when a key person can’t attend the meeting, but
has an important role to share. This person’s contributions
can be shared by:
- Asking the key person to send a representative.
- Phone conferencing with the absentee person.
- Sharing notes or letters between a team leader and the other
person.
- Consulting with the person prior to the meeting.
- E-mailing to and from the person.
- Using data faxing to exchange important information with the
person.
- Using the Med Home School Evaluation
Recommendations Form under Schools and Education
in the Medical
Home website.
Service interventions for a child/family need, to include such
opportunities as having bus passes, tutors, trainers, swimming lessons,
recreation, daycare camps and after-school supervision. Such opportunities
offer desperately-needed interventional means, such as strengthening
self-esteem, identity building, respite, socialization, and interest
and talent-enhancement with potential use in the development of
a portfolio. The team needs to continue identifying ways of cooperating
with other agencies and programs in acquiring these kinds of resources
and activities. (See Our Practices - Part IV under the menu For
Professionals for ideas.)
Finally, group conferencing is not a program, but a basic process,
and is often preliminary to a more in-depth core-teaming involvement.
Policies and procedures for core teaming are further accessed under
School
Conferencing Example Handout and Collaborative
Coordination and Team Building Handout.
Utilizing Community Supports: Rather than just
giving out a telephone number, life-giving as it may be, consider
using the Topical Resource Guide for Families of Children
with Special Health Care Needs as an empowerment tool.
It not only gives information of countless local resources, but
also gives ideas on types of resources to look for in any community
and for numerous special-needs circumstances. The Topical Guide
was the basis for starting this website as a means for motivating
people to feel more in charge of their community resources while
building stronger self-advocates. See Oher
Resources - MedHome Portal - Community Services.
H. Gathering a Multi-Systemic Core
Team:
Children from low-resource families who receive services from multiple
agencies suffer serious consequences when, due to resource deficits,
important recommendations that have been given are not enacted.
However, a “core team” or core of helpers can “insure”
that a network is in place bringing home, school, church and community
together. If the core team includes ample extended family members,
it can continue developing ideas after agency people leave. Scheduled
meetings that are held every 30, 60 or 90 days for a period of time
provide a safety net, where members may act as an audience witnessing
the unfolding of significant accomplishments. Chances for long-term
systemic changes are offered that would not otherwise occur as the
diverse parts or members begin to integrate.
This meeting affords the opportunity to re-tell what is heard
in a previous story in a way that fosters reflection and reordering
of the information. Core team members sit as witnesses and are drawn
to these stories linking or sharing significant life-themes and
values among themselves. These are powerful and moving moments that
the family can then take into their own world. While there is an
opportunity for focused intervening, ultimately, the experience
derived from the shining and unique narratives will be the motivation
to go on as a group. An important question is, “How do we
secure family ownership of the meeting so the gatherings become
“memorable”, rather than a rehash of bureaucratic thinking?”
Core teaming advantages include:
- Continuance of program service beyond agency-involvement
- Brainstorming that uses many perspectives and voices
- Opportunity to measure and support change
- Less intrusive problem-solving
- The rendering of compassionate solutions through village spokesmen
- Family empowerment, strength and ownership through parent involvement
- Increased perspective through the use of the Family
Health Promotion Concept Plan
- See also Clinical
Vignette Handout
See How
to Form a Core Team by Collaborative Coordination Handout.
Application: The
Core-Team Rating Scale Form is a 1-10 satisfaction scale combining
many of the above features designed to determine parents’
feelings about how the group conversation has gone, and to learn
of any necessary adjustments or changes. This feedback is helpful
for making meaningful improvements for subsequent core-team encounters.
See Nursing
Checklist and Development and Life Experiences Form. (ABLE uses
these forms for gathering medical, academic, social, emotional and
other child/family data.)
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