Working With Professionals:
The Parent/Professional Relationship
Taken from The Unplanned Journey: Part 3
When You Learn That Your Child Has a Disability
NICHCY News Digest Second Edition
Authors: Carole Brown, Samara Goodman, and Lisa Kupper
Parent Cory Moore, speaking
directly to professionals, writes, "We need respect, we need to have our
contribution valued. We need to participate, not merely be involved. It is,
after all, the parent who knew the child first and who knows the child best.
Our relationship with our sons and daughters is personal and spans a lifetime."
(Moore, 1993, p. 49)
Recognizing the central
role of the family in a child's life, many service systems now provide assistance
to parents and other family members using what is known as family- centered
support principles (Shelton, Jeppson, & Johnson, 1989). Within this philosophy,
the family's influence is recognized as primary, both because of its direct
impact on the child's development and because the family serves as the link
between the child and the outside world. Thus, you have the right to be fully
informed and involved in decisions affecting your child and family.
Many of the books listed
throughout this News Digest offer insight into how you might work together with
professionals for the benefit of your child and family. The best relationships
are characterized by mutual respect, trust, and openness, where both you and
the professional exchange information and ideas about the best care, medical
intervention, or educational program for your child. Information also must be
exchanged about the needs of your family and about ways to take advantage of
helping patterns that already exist within the family. (Fewell & Vadasy,
1986) Both you and the professional need to speak clearly about issues and listen
carefully. Indeed, both of you have important expertise to share.
You, for example, have intimate
knowledge of your child with special needs; you live with and observe your son
or daughter on a daily basis and can contribute invaluable information about
his or her routine, development, history, strengths, weaknesses, and so on.
To make an accurate diagnosis, determine appropriate therapy or other interventions,
and understand both your child and the needs and resources of your family, the
professional needs your perspective and unique insight.
The professional, too, has
specialized knowledge to contribute -- that of his or her discipline. Often
you must rely upon the judgment of the professional in matters that are critical
to the well-being of your child, a position that may make you feel on unequal
and uncertain footing. How comfortable you feel with the professional, how well
you feel that individual relates to your child, and how openly he or she responds
to your concerns and input will, in many cases, determine whether you continue
to work with the professional or decide to seek the services of another.
Thus, there should be a
mutuality in the parent/professional relationship. Both parents and professionals
need to trust and feel trusted, both need to admit when they do not know or
are wrong, and both need to negotiate with each other (Finston, 1990). Trust,
respect, and open communication between parent and professional are, therefore,
essential to building a good,working relationship. This can take time to develop
and may require effort from both parties. To that end, many parent writers suggest:
- If you are looking for
a specialist with whom you can work well, ask other parents of children with
disabilities. Often, they can suggest the name of a good speech or physical
therapist, doctor, dentist, surgeon, and so on.
- If you don"t understand
the terminology a professional uses, ask questions. Say, "What do you
mean by that? We don"t understand."
- If necessary, write
down the professional's answers. This is particularly useful in medical situations
when a medication or therapy is to be administered.
- Learn as much as you
can about your child's disability. This will assist you with your child, and
it can help you participate most fully in the team process.
- Prepare for visits to
the doctor, therapist, or school by writing down a list of the questions or
concerns you would like to discuss with the professional.
- Keep a notebook in which
you write down information concerning your special needs child. This can include
your child's medical history, test results, observations about behavior or
symptoms that will help the professional do his or her job, and so on. (A
loose-leaf notebook is easy to maintain and add information to.)
- If you don't agree with
a professional's recommendations, say so. Be as specific as you can about
why you don't agree.
- Do whatever informed
"shopping around" and "doctor-hopping" is necessary to
feel certain you have explored every possibility and potential. As Irving
Dickman (1989) says, "Shop. Hop. Hope" (p. 100).
- Measure a professional's
recommendations for home treatment programs or other interventions against
your own schedule, finances, and other commitments. You may not be able to
follow all advice or take on one more thing, feeling as Helen Featherstone
(1980) did when she wrote, "What am I supposed to give up?...There is
no time in my life that hasn't been spoken for, and for every fifteen-minute
activity that has been added, one has to be taken away" (p. 78). Peggy
Finston (1990) points out that "most professionals won't be familiar
with the sum total of our obligations and will not take it upon themselves
to give us permission to quit. This is up to us. It's in our power to make
the decision" (p. 188).
In conclusion, it is important
that the parent/professional relationship empower the parent to be a full participant
in information-gathering, information-sharing, and in decision- making. However,
it is ultimately up to you to decide what role(s) you want to take in this process
and what role(s) you need help with. It is helpful to know that families do,
indeed, choose different roles in relationship to professionals. Some parents
want to allow professionals to make most decisions about their child, others
want to serve as an informant to the professional, some want veto power, and
some parents want a shared role in the intervention with their child (McBride,
Brotherson, Joanning, Whiddon, & Demmit, 1992).
You are also free to change
your mind about the role or level of involvement you may want or be able to
assume regarding your child's services. You may find that you choose different
roles at different times for different purposes. Be as direct as possible about
what you want or don't want to take on in this regard.
NICHCY News Digest Second Edition February 1997
Parenting a Child with Special Needs: A Guide to Readings and Resources
National Information Center for
Children and Youth with Disabilities
P.O. Box 1492
Washington, DC 20013
Web site: http://www.nichcy.org/