Ethical Practice Dilemmas in Early Childhood: Views from the Trenches

1. 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

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

3. 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

4. Gender Female 87 Male 3 Age 20-30 26 31-40 56 40+ 18 Ethnicity African American 19 Caucasian 66 Other 5 Focus Group Demographics

5. 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.

6. 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

7. 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.

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

9. 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.”

10. 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.”

11. 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!

12. 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.”

13. 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.

14. 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”

15. 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!”

16. 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.”

17. 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.”

18. 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.”

19. 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.”

20. 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.”

21. 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.”

22. 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.”

23. 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.”

24. 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.”

25. 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.

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

27. 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.”

28. 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.”

29. 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.”

30. 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

31. 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?”

32. What conflict resolution strategies or guidelines do you use?

33. What principles and guidelines should guide our decision making? • Parental Autonomy • Informed Consent • Equality

34. Ethical Decision Making • Professional Values and Standards • Personal Values and Standards • Careful Consideration and Reflection of All Viewpoints • “Third Space”

35. 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.

36. Code of Ethics is Available at: http://dec-sped.org/uploads/docs/about_dec/position_concept_papers/Code%20of%20Ethics_updated_Aug2009.pdf Permission to copy not required – distribution encouraged.