Family-Professional Partnerships as

a Means to Enhance Family Quality

of Life Outcomes
Ann Turnbull
turnbull@ku.edu
Beach Center on Disability
1200 Sunnyside Avenue, 3111 Haworth Hall
The University of Kansas
Lawrence, 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

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

The Bad and The Ugly

What Will You Do When

You Fail?

Family-Professional Partnerships:
Qualitative Research

Communication
Professional Competence
Respect
Commitment
Equality
Trust
5

Partnerships as Support: From

Qualitative to Quantitative Research
Qualitative Domains

Factors

1. Communication
2. Professional Competence
3. Respect
4. Commitment
5. Equality

1. Relationship between
service provider and
child
2. Relationship between
service provider and
parents

6. Trust

Family Textbook

Delineates a family systems theoretical orientation.

Describe 7 partnership principles with trust being the keystone.

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.

Provides students with historical and legal foundations related to

family roles.

Applies the 7 partnership principles to enhancing partnerships in

student evaluation, development of the IFSP/IEP, and
implementation of the childs IFSP/IEP program.

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

Family
FamilyQuality
Qualityof
ofLife
Life
Disability-Related
Support
Family Interaction
Physical/Material
Well-Being
Emotional Well-Being
Parenting
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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

% / 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 communitysponsored group

40

43

2. Belong to religious group

53

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3. Belong to special interest group

7
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Power of Extracurricular Activities

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21

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
%/D

% / ND

1. Income less than $25,000

36

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2. More than $75,000

13

24

3. Percent living in poverty

24

16

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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.

Support is individualized, responsive, and

available 24 hours a day.

Most parent to parent programs offer additional

activities.

Most matches last between 1-6 months, although

many matches evolve into lifelong friendships.

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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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