ann turnbull keynote

Family-Professional Partnerships as a Means to Enhance Family Quality

of Life OutcomesAnn Turnbull

turnbull@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 could”Mark Twain

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Family-Professional Partnerships: “The Good, The Bad, and The Ugly”

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“The Bad and The Ugly”

“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

1. Communication

2. Professional Competence

3. Respect

4. Commitment

5. Equality

6. Trust

1. Relationship between service provider and child

2. Relationship between service provider and parents

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• 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 child’s 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.

Family Textbook

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• 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.

Research Findings on Partnerships

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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.

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

Family Quality of Life

Emotional Well-Being

Disability-Related Support

Parenting

Physical/Material Well-Being

Family Interaction

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Disability-Related Support

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Definition: Focuses on support from family members and from outside of the family provided in order to benefit the family member with a disability.

• 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.

Sample Items

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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.

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

% / MR % / Aut.1. Never visited with friends 17 32

2. Rarely/never receives phone call 50 81

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Participation in Activities

% / MR % / Aut.1. Participated in community-

sponsored group40 43

2. Belong to religious group 53 52

3. Belong to special interest group 8 7

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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 child’s 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.

Definition: Focuses on the relationships among family members.

• 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.

Sample Items

Family Interaction

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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 child’s 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 child’s strengths and preferences.

• Share information about community resources that could be helpful in expanding the understanding of extended family members about the child’s 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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Definition: Refers to the resources available to the family to meet its members’ needs.

• 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.

Sample Items

Physical/Material Well-Being

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Income Comparisons

% / D % / ND1. Income less than $25,000 36 24

2. More than $75,000 13 24

3. Percent living in poverty 24 16

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• Living in poverty

Children who have disabilities have a greater likelihood of…

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• Are more likely to have a single parent (time)

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

Children Who Experience Poverty…

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• 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.

Ways to Support Families

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Definition: Refers to the feeling or affective parts of family members and family life.

• 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.

Sample Items

Emotional Well-Being

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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

Definition: Refers to activities that adult family members do to help children grow and develop.

• 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

Sample Items

Parenting

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• Seek Tennessee resources for families.

STEP (Support and Training for Exceptional Parents) – 800-280-STEP

Good Information is Essential for Good Parenting

• Family members help the children learn to be independent.

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• Making important decisions

• Earning more money per hour

• Experiencing a higher quality of life

Positive Outcomes of Self-Determination

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www.beachcenter.org

• 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!