Transcript Ethical Practice Dilemmas - 2015 Early Childhood Inclusion Institute

Ethical Practice Dilemmas in
Early Childhood: Views from
the Trenches
Harriet Able, Ph.D.
School of Education
University of North Carolina at
Chapel Hill
National Inclusion Institute, 2012
Assistance from:
Chih Ing Lim and Tracey West
And the many practitioners who
shared their dilemmas and wisdom
with us
Focus Group Method

8 focus groups conducted (3 rural; 5 urban areas)

Focus Groups ranged from 6 – 21 participants

Audiotaped and transcribed verbatim

Member Check Procedure
Focus Group Demographics
Gender
Female
Male
87
3
Age
20-30
31-40
40+
26
56
18
Ethnicity
African American
Caucasian
Other
19
66
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Child Rearing Values and
Practices

The Greenfeather family has chosen to
have their 18 month old child with severe
cerebral palsy undergo a sweat lodge
ceremony. They believe this is the best
option for their child rather than enrolling
him in the local early intervention
program in order to receive physical
therapy.
Values, Morality, and Ethics

Values are central to decision making – they provide a context within
which people make decisions and choices.

Morality – Person’s beliefs about what is right or wrong; good or bad

Ethics – The study of right and wrong or duty and obligation
Intervention Implies Change

Early intervention , by definition, is
intrusive. It provides something a
family may or may NOT want. It is
something a family does not expect to
have.
Sample Conflicts




Convenient Services Versus What is
Best for the Child
Alternative Therapies and Treatments
Child Versus Family Centered
Professional Whistle Blowing
Service Accessibility

Unequal Access to Resources for Families
“There are children who are undocumented residents. They are from
low income families but they can’t get Medicaid because they have no
social security numbers. So, it’s hard to get them through the
system.”

Disjointed Services
“We can have a team of professionals working with a child, and
there’s no funding to pay everyone for talking to each other. And a
child could potentially wind up getting four different services from four
different providers OR not getting services at all because there are too
many gatekeepers.”
Service Accessibility

We were serving a child with spina
bifida – whose only needs were physical
– because he had a single mother
whose transportation was limited – he
was bussed to the special education
preschool where he was placed with
children with developmental delays.”
Alternative Therapies and
Treatments


A mother asked me if I would
participate in her child’s patterning
therapy.
We had a child who came to preschool
weak and nauseated everyday because
he was not getting any lactose or wheat
in his diet. He had no energy to do
anything!
Alternative Interventions
Parental and Professional Conflicts
“Mom was going to autism support groups and there were many
different ideas out there, and she decided to take him off foods with
wheat and lactose. And for young children, this isn’t a good thing as it’s
hard to find replacements. He would come to school and be very pale
and would be throwing up. It was hard for me. I didn’t know the right
thing to do.”
Parent Versus Child Centered:
Ricardo Case Study

Ricardo is a five year old who has been enrolled in early intervention
services since he was 14 months old. Ricardo has cerebral palsy and
needs physical and speech and language therapy. The local early
intervention and preschool teams have extensive records regarding
Ricardo’s developmental progress and needs. The parents and early
intervention team have had many disagreements about what is best
for Ricardo. The parents, who are Mexican immigrants, are now
moving out of state to a rural area. They view their move as giving
their family and Ricardo a second chance so he won’t be labeled in
kindergarten. Consequently, his parents have requested that his
school records not be sent to the receiving school district. They
prefer that the school district not know anything about Ricardo’s early
intervention services.
Ricardo Case Study

Child’s Needs Versus Parents’ Rights
“It is a moral question to me, as a teacher, to know that I have this information
that will help this child – but I have to protect the child’s and family’s
confidentiality too.”
“In this case you have to choose to be the child or the parent advocate”
Ricardo Case Study

Confidentiality
“Confidentiality is a big issue because the parents don’t want you sharing
information with the next team about Ricardo – because they don’t want the
kindergarten team to have preconceived notions about him. I would want to
help the next team and give them information BUT the parents have asked that
the information not be shared!”
Kindergarten Teacher's and
Other Children's Rights

“Ricardo is going to compromise the ability of the kindergarten teacher
to address the needs of the other children in her kindergarten class. As
a parent, I think I have a right not to have my child's kindergarten
experience compromised by Ricardo's needs particularly if he has to go
through the referral process to special education again.”
Conflict Resolution

Parental Informed Decision Making
“One way to approach the parents is to try to help them understand
that if their child goes to a new school without any assistance – the
child is really going to be at a disadvantage the first day. He is not
going to have the help he needs so he is going to fall further behind
and then there will be a delay before he will have the supports to do
his best work again.”
 Provide parents with information and options
“I would tell the parents what to look for during the first months
of school and how to get services in the school if they change their
minds.”
Parental and Professional
Conflicts

Child Rearing Practices
“I visited a home where the mother has her child in a play pen all day long,
without any stimulation. She jokingly says he’s in prison….I felt so sorry for the
child that I wanted to pick him up and run away.”

Parental Misuse of Services
“Where do we draw the line when a family behaves inappropriately? They say
they’ll be home, and you keep coming and they are not home.”
Cultural Differences

Language Barrier
“My biggest challenge is providing a good service when I do not
speak the language or have an understanding of the family’s
background. I’m not sure if the use of a translator is ethical because
you are not sure what message is being sent to the family. So, for
me, it’s an ongoing challenge whether I’m providing a good service
or is it better than nothing.”
Cultural Differences

Expectations and Priorities
“We had a little guy from an Eastern European country and the cultural
expectation was that the family would continue to do a lot of what we think
of as independence skills like self feeding. I think their expectation really was
that they would continue to feed him until he was three. I think that was
more their cultural norm and value.”
Cultural Differences

Child Rearing Practices
“One of the parents was upset when one of the therapists criticized her for
spanking her child. And she seemed to want me to tell her it was okay. And I
really didn’t know how to address that. I could tell it really bothered her
because the therapist made her feel bad.”
Professional Conflicts

Different Standards of Care
“Private therapists recommend to the parent that the only model of
therapy that really works is pull the child out and drill, drill, drill …but
we do integrative therapy so I’m playing in the classroom and that’s a
hard thing to explain without putting down another professional.”
Professional Conflicts

Different Professional Opinions about Child’s Needs or Services
“I have challenges getting doctors to agree that an evaluation needs to be done
on a child. They see the child for 20 minutes, and I see the child two to three
times a week, and even if the parents want it, it’s a challenge getting that need
met.”
Professional Conflicts

My colleagues gives parents all these
home activities to do – the parents talk
to me about how overwhelmed they are
with their pages of worksheets to do
with their child.”
Professional Conflicts

This therapist does not give parents
enough information – she makes
decisions for them and tells them what
should be done for their child regarding
medical treatments AND therapies.

What practice dilemmas have you
encountered in your work with
families and children?
Conflict Resolution Strategies

Administrative and Peer Support
“We have been good at setting aside time in our staff meetings for staff to
discuss common issues like no shows. These opportunities help us decide what
action we’re going to take. Together with HIPA and center guidelines as well as
professional ethics, these help us decide which side of the fence to sit on.”
Conflict Resolution Strategies

Open Communication
“You have to have an atmosphere of trust where people can feel
comfortable to say things and know there are no repercussions. It’s
amazingly difficult because people have individual styles. Some are
confrontational, others keep it all in. So you need to know how to get
everyone to share openly.”
Conflict Resolution Strategies

Respect for Parents
“I think, in our work, we always have to respect, ultimately, the opinions of the
parent. Realizing that the parent knows their child best, and has their best
interest in mind and that any decision they make, in regard to what is shared
about their child is the right decision.”
Family Informed Decision
Making
1. Full Information
2. All the options for services and
supports
3. Our role is to inform/ educate –
family’s role is the decision maker
Conflict Resolution Strategies

Confronting One’s Biases
“You need to take time to reflect on your own values, your own
wishes, your own desires, your own biases. So when you get
into a situation, you can stop and think: “Am I somebody who’s
going to tell this mother about what is right or wrong for her
child? Is that appropriate?”
What conflict resolution strategies or
guidelines do you use?
What principles and guidelines
should guide our decision making?
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Parental Autonomy

Informed Consent
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Equality
Ethical Decision Making
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Professional Values and Standards
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Personal Values and Standards
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Careful Consideration and Reflection of
All Viewpoints
“Third Space”
•
Division for Early Childhood
Code of Ethics
•The principles and guidelines for practice include:
I. Professional Practice;
II. Professional Development and Preparation;
III. Responsive Family Practices; and
IV. Ethical and Evidence Based Practices.
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Code of Ethics is Available at:
http://decsped.org/uploads/docs/about_dec/positi
on_concept_papers/Code%20of%20Eth
ics_updated_Aug2009.pdf
Permission to copy not required –
distribution encouraged.
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