Ethical Practice Dilemmas in Early Childhood: Views from the Trenches

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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

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• Assistance from
• Chih Ing Lim and Tracey West
• And the many practitioners who shared their
  dilemmas and wisdom with us

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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

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Focus Group Demographics

• Gender
• Female 87
• Male 3
• Age
• 20-30 26
• 31-40 56
• 40 18

• Ethnicity
• African American 19
• Caucasian 66
• Other 5

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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.

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What are the issues here?

• Tribal Values and Practices within the Home
• Inclusion in the Community OR the Natural
  Environment?

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Values, Morality, and Ethics

• Values are central to decision making they
  provide a context within which people make
  decisions and choices.
• Morality Persons beliefs about what is right
  or wrong good or bad
• Ethics The study of right and wrong or duty and
  obligation

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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.

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Sample Conflicts

• Convenient Services Versus What is Best for the
  Child
• Alternative Therapies and Treatments
• Child Versus Family Centered
• Professional Whistle Blowing

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Service Accessibility

• Unequal Access to Resources for Families
• There are children who are undocumented
  residents. They are from low income families but
  they cant get Medicaid because they have no
  social security numbers. So, its hard to get
  them through the system.
• Disjointed Services
• We can have a team of professionals working
  with a child, and theres 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.

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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.

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Alternative Therapies and Treatments

• A mother asked me if I would participate in her
  childs 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!

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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 isnt a
  good thing as its hard to find replacements. He
  would come to school and be very pale and would
  be throwing up. It was hard for me. I didnt know
  the right thing to do.

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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 Ricardos
  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 wont 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
  Ricardos early intervention services.

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Ricardo Case Study

• Childs 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 childs
  and familys confidentiality too.
• In this case you have to choose to be the child
  or the parent advocate

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Ricardo Case Study

• Confidentiality
• Confidentiality is a big issue because the
  parents dont want you sharing information with
  the next team about Ricardo because they dont
  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!

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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.

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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.

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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 hes 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 theyll be home, and
  you keep coming and they are not home.

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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 familys background. Im
  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, its an ongoing
  challenge whether Im providing a good service or
  is it better than nothing.

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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.

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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 didnt know how to address
  that. I could tell it really bothered her because
  the therapist made her feel bad.

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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 Im playing in the
  classroom and thats a hard thing to explain
  without putting down another professional.

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Professional Conflicts

• Different Professional Opinions about Childs
  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, its a challenge getting that
  need met.

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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.

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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.

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• What practice dilemmas have you encountered in
  your work with families and children?

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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 were 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.

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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. Its 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.

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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.

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Family Informed Decision Making

• 1. Full Information
• 2. All the options for services and supports
• 3. Our role is to inform/ educate familys
  role is the decision maker

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Conflict Resolution Strategies

• Confronting Ones 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 whos going to
  tell this mother about what is right or wrong for
  her child? Is that appropriate?

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• What conflict resolution strategies or guidelines
  do you use?

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What principles and guidelines should guide our
decision making?

• Parental Autonomy
• Informed Consent
• Equality

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Ethical Decision Making

• Professional Values and Standards
• Personal Values and Standards
• Careful Consideration and Reflection of All
  Viewpoints
• Third Space

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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//dec-sped.org/uploads/docs/about_dec/positio
  n_concept_papers/Code20of20Ethics_updated_Aug200
  9.pdf
• Permission to copy not required distribution
  encouraged.