Family-Professional Partnerships as a Means to Enhance Family Quality of Life Outcomes

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Family-Professional Partnerships as a Means to
Enhance Family Quality of Life Outcomes

• Ann Turnbullturnbull_at_ku.edu
• Beach Center on Disability1200 Sunnyside Avenue,
  3111 Haworth Hall
• The University of KansasLawrence, KS 66045-7534
• 785-864-7600 (phone)785-864-5825 (fax)
• www.beachcenter.org
• 2006 Tennessee CEC Conference A World of
  Possibilities Excellence in Special Education
• Memphis, TN
• February 17, 2006

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If only youth knew, and if only age couldMark
Twain
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Family-Professional Partnerships The Good, The
Bad, and The Ugly
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The Bad and The Ugly
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What Will You Do When You Fail?
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Family-Professional Partnerships Qualitative
Research

• Communication
• Professional Competence
• Respect
• Commitment
• Equality
• Trust

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Partnerships as Support From Qualitative to
Quantitative Research
Qualitative Domains
Factors

• Communication
• Professional Competence
• Respect
• Commitment
• Equality
• Trust

• Relationship between service provider and child
• Relationship between service provider and parents

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Family Textbook

• Delineates a family systems theoretical
  orientation.
• Provides students with historical and legal
  foundations related to family roles.
• Describe 7 partnership principles with trust
  being the keystone.
• Applies the 7 partnership principles to enhancing
  partnerships in student evaluation, development
  of the IFSP/IEP, and implementation of the
  childs IFSP/IEP program.
• Has extensive website www.prenhall.com/turnbull
  with case studies, role plays, resources, and
  test questions. In the next year, the Beach
  Center will have an online version of the course.

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Research Findings on Partnerships

• Families from three age groups of children
  (birth-3, 3-5, 6-12) place equal importance on
  different aspects of partnerships.
• Regarding satisfaction with partnerships, parents
  of children ages 6-12 are uniformly less
  satisfied than parents of children ages 3-5, who
  also are less satisfied than parents of children
  birth-3.

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• Low income families rate all the items related to
  partnership as equally important as contrasted to
  middle and high income families but low income
  families are significantly less satisfied.
• Families who have higher satisfaction with
  partnerships also have higher family quality of
  life.
• Partnerships can make a difference in how well
  services impact families.

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Family Quality of Life

• The degree to which family members needs are
  met.
• The extent to which they enjoy their time
  together.
• The extent to which they are able to do things
  that are important to them.

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Family Quality of Life Domains
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Disability-Related Support
Definition Focuses on support from family
members and from outside of the family provided
in order to benefit the family member with a
disability.
Sample Items

• My family member with special needs has support
  to achieve goals at home.
• My family member with special needs has support
  to make progress at school or in the work place.
• My family member with special needs has support
  to make friends.

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• My family member with special needs has support
  to achieve goals at home.
• My family member with special needs has support
  to make progress at school or in the work place.

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A Home of His Own
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Work
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• My family member with special needs has support
  to make friends.

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Interactions with Friends
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Participation in Activities
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Power of Extracurricular Activities
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Which One Has a Disability???
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Tips for Promoting Friendships

• Create your own vision that children and youth
  with disabilities belong in typical
  relationships and typical settings.
• Support families to adopt a vision of their own
  about belonging.
• Advocate for inclusive settings and foster
  friendships with these settings.
• Seek opportunities for extracurricular
  participation and provide supports to enable it
  to be successful.

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• Provide scripts for answering questions of others
  and for helping others feel comfortable and
  confident.
• Build on each childs strength in order to make
  connections with others.
• Encourage families whose children have had
  success with friendships to share their
  experiences with parents who doubt that it can
  happen.

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Family Interaction
Definition Focuses on the relationships among
family members.
Sample Items

• My family members talk openly with each other.
• My family enjoys spending time together.
• My family members show that they love and care
  for each other.

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Tips for Strengthening Family Interaction

• Encourage families to bring extended family
  members to IFSP/IEP meetings.
• Foster communication with extended family through
  sharing artwork, writing emails/letters, and/or
  communicating in the childs preferred mode of
  communication.

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• Find out about the particular interests and
  hobbies of extended family members and think
  about how to make a connection between those and
  the childs strengths and preferences.
• Share information about community resources that
  could be helpful in expanding the understanding
  of extended family members about the childs
  special needs.
• Help connect the parents and extended family
  members with other parents and extended family
  members who have made very positive adjustments.

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Physical/Material Well-Being
Definition Refers to the resources available to
the family to meet its members needs.
Sample Items

• My family has a way to take care of our expenses.
  
• My family gets medical care when needed.
• My family members have transportation to get to
  the places they need to be.

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Income Comparisons
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Children who have disabilities have a greater
likelihood of

• Living in poverty

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Children Who Experience Poverty

• Are more likely to have a single parent (time)
• The parent is more likely to have less education
  (need for information and advocacy support)

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Ways to Support Families

• Refer to community agencies that specialize in
  assisting families with economic resources.
• Look for organizations that invest resources in
  students such as Big Sister/Big Brother programs
  and community service clubs.
• Help families understand opportunities through
  SSI.
• Help families understand opportunities through
  Medicaid.
• Partner with families to seek assistance to meet
  their needs through a broad array of Tennessee
  resources www.nichey.org/stateshe/tn.htm.

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Emotional Well-Being
Definition Refers to the feeling or affective
parts of family members and family life.
Sample Items

• My family members have friends or others who
  provide support.
• My family has the support we need to relieve
  stress.
• My family members have some time to pursue their
  own interests.

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Facilitating Parent to Parent Support

• One-to-one support between a veteran parent and a
  parent experiencing a challenge for the first
  time for the purpose of providing emotional and
  informational support.
• Veteran parents are experienced and receive
  formal training.
• Most programs are cross-disability and cross
  lifespan.

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• Veteran parents volunteer their time.
• Most matches last between 1-6 months, although
  many matches evolve into lifelong friendships.
• Support is individualized, responsive, and
  available 24 hours a day.
• Most parent to parent programs offer additional
  activities.

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Parent Perspectives
When our son with Down syndrome was born three
years ago, my husband and I were devastated. We
called our Parent to Parent program, which
supplied us with invaluable information, as well
as sending us a support couple to talk with. It
was important to us to meet with the couple not
just the mother since my husband takes as much
responsibility for caring for our children as I
do. Also important was that we were matched with
a couple whose child had also been through open
heart surgery (our son had major defects). The
couple that our Parent to Parent program sent us
were such warm, optimistic, normal people, they
gave us hope.
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About a year later, my husband and I were trained
by our program to be support parents. The Parent
to Parent office has many requests for visits
from both father and mother. My husband was one
of very few men willing to go through formal
training. I have also found that support for
non-English speaking families is hard to come by.
It has been satisfying to me to be able to serve
the Spanish-speaking community.
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Research Findings on Parent to Parent

• Results
• 128 parents participated from five states
• P2P makes a significant difference in
• The amount of progress parents feel they have
  made in getting their needs met.
• Parental acceptance of the family situation
  related to disability.
• Parental acceptance of the family situation
  related to disability.

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Tennessee Resource for Parent to Parent

• Parent Encouraging Parents
• Greg Yopp
• www2.state.tn.us/health/mch/css.htm

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Parenting
Definition Refers to activities that adult
family members do to help children grow and
develop.
Sample Items

• Adults in my family have time to take care of the
  individual needs of every child
• Adults in my family teach the children to make
  good decisions
• Family members help the children with school work
  and activities

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Good Information is Essential for Good Parenting

• Seek Tennessee resources for families.
• STEP (Support and Training for Exceptional
  Parents) 800-280-STEP

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• Family members help the children learn to be
  independent.

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Positive Outcomes of Self-Determination

• Making important decisions
• Earning more money per hour
• Experiencing a higher quality of life

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www.beachcenter.org
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• Family members help the children with school work
  and activities.

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Tips for Supporting Parents to Help with Homework

• Ensure communication among all students teachers
  to avoid homework overload.
• Ensure the general education teachers have access
  to full information on students preferences,
  strengths, and needs related to homework
  modification.
• Increase students responsibility.
• Teach students to use homework planners.
• Teach students to graph their homework completion.

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• Foster full teacher-student-parent communication
  about homework.
• Use students graph of homework completion at
  parent-teacher-student conferences to discuss
  progress with parents.
• Communicate frequently with parents about
  homework assignments and students progress.
• Use written forms of communication such as notes,
  progress reports, and forms.

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• Give parents access to homework assignments by
  telephone/voicemail with the option for parents
  to leave messages if they have questions.
• Provide parents with teachers names and their
  preferred times and methods for being contacted.

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Family Quality of Life

• Beach Center Family Quality of Life Scale
• 5 domains
• 25 items
• Resource Full-text articles and information on
  availability of the scale is on
  www.beachcenter.org

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Research Findings on Family Quality of Life

• Families seem to be least satisfied with their
  emotional well-being.
• Mothers and fathers tend to view family quality
  of life in the same way.
• Mothers and fathers of children with more severe
  disabilities are less satisfied with family
  quality of life as contrasted to those whose
  children have less severe disabilities.

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• Mothers from families with lower income are less
  satisfied with family quality of life than
  mothers from families with higher incomes. This
  trend does not hold for fathers.
• Parents are more satisfied with family quality of
  life when
• They are more satisfied with partnerships
• More of their service needs are met
• They experience fewer challenges with community
  participation.

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The Good, The Bad, and The Ugly The Good
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You never know when one or more of your actions
with families will have a life-changing impact on
them.
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One man one family and teacher scorned and
covered with scars still strove with his their
last ounce of courage to reach the unreachable
stars And the world will be better for
this. Cervantes
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The Turnbull world has indeed been better for
having had Mary Morningstar as a teacher. And,
indeed, you can be the catalyst for reaching the
unreachable stars in the lives of the families of
the students you teach. And, yes, their world
will be better for you!
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