Ethics in the Early Intervention System: A Mixed Methods Exploration

Abstract

Early interventionists may frequently encounter ethical dilemmas due to the complex nature of early intervention (EI) service delivery (e.g., EI system infrastructure and building and sustaining collaborative relationships within the system). Therefore, the purpose of this research study was to explore the experiences of EI professionals related to ethical dilemmas. We used a sequential mixed methods design to first survey professionals about their experiences with ethical dilemmas (n = 427). Then, we interviewed a smaller sample (n = 45) to learn about early interventionists (EIs) experiences with ethics, including their constructed meanings of ethical dilemmas, the types of ethical dilemmas they have experienced, and their experiences and processes navigating ethical dilemmas. Results show that EI professionals define ethical dilemmas differently, which influences what they view as a dilemma and how they problem solve. Additionally, professionals identified the need for support and guidelines related to ethical dilemmas.

Keywords

early education programs IDEA infancy toddlers

Ethical guidelines encompass the core values and beliefs of an individual or an organization to guide the behavior and decision making of professionals (Dally, 2005). In Part C early intervention (EI), professionals are engaged in multiple relationships with the goal of supporting young children ages birth to three with a disability, their families or other caregivers, through a coaching process in home and community settings. While there is no specific definition of “ethics” EI there is other guidance. Ethical guidelines can be used to promote and maintain high standards of conduct in EI. The Council for Exceptional Children (CEC, 2015) published codes of ethics that highlight ethical guidelines for special education professionals. Similarly, the Division for Early Childhood (DEC, 2022) published a position statement on ethical practice that discusses core principles and covers a range of roles that early childhood special education professionals may have, including as EI professionals. Furthermore, this statement urges early intervention/early childhood professionals to use sound ethical reasoning and decision-making in order to advance equitable and inclusive practices for all young children. However, this is new and not yet broadly used within the field. The previous code of ethics (DEC, 2009) did not discuss EI in detail.

Federal legislation, policy guidelines, and research call for a focus on family-centered practices in EI services (DEC Recommended Practices, 2014; Dunst et al., 1991; Individuals with Disabilities Education Improvement Act [IDEIA], 2004; U.S. Department of Health & Human Services & U.S. Department of Education, 2016). Family-centered practices include focusing on family strengths, having flexible service delivery systems, respecting family diversity and values, encouraging family empowerment and decision-making, and maintaining open and collaborative lines of communication with families (Bailey et al., 2012). Given the complex nature of EI systems, professionals are likely to encounter ethical dilemmas. EI professionals often work in homes and child care settings with families and other caregivers and may have different priorities than family members/caregivers related to raising children and child development (Able et al., 2017). They may also work with young children who have experienced maltreatment (Corr & Santos, 2017). The combination of a need for family-centered practices and working with potentially vulnerable populations calls particular concern for ethical dilemmas (Paul et al., 2001). Ethical guidelines in related fields exist (American Physical Therapy Association [APTA], 2020; American Speech-Language-Hearing Association, 2016; National Association of Social Workers [NASW], 2021), and DEC (2022) recently released a position statement on ethical practice. However, there continues to be a gap in guidance to support EIs ethical decision making practices when providing services and support in cross-disciplinary, natural environments.

Types of Ethical Guidance

Although there are many places for EIs to get information about ethical conduct, Part C of the Individuals with Disabilities Education Improvement Act (IDEIA) does not include any formal ethical guidance. Therefore the onus of implementation falls to individual states, as professional guidance is interpreted differently by each state. Some states have designated key principles for their early interventionists (EIs) to follow (Mississippi State Department of Health, 2021; Rhode Island Executive Office of Health and Human Services, 2016), and many others include professionalism and other areas of practice that may lead to ethical dilemmas (e.g., family-centered practices, safety, confidentiality) as training topics for certification (Connecticut Office of Early Childhood, 2016; Early Intervention Colorado, n.d.).

However, to date, no state has published ethical guidance for EI professionals. Additionally, no state has explicitly included ethical guidelines in their EI principles (e.g., what steps to take if a parent describes services from another provider that are not evidence-based), and there are limited opportunities for EIs to access technical assistance related specifically to ethical dilemmas. Outside of national and state legislation, EIs across disciplines (e.g., developmental therapy, occupational therapy, speech-language pathology, social work) may turn to a variety of resources for ethical conduct. Professional organizations related to early intervention (e.g., DEC, 2022; Zero to Three, 2021), special education (e.g. CEC, 2015), and early childhood education (e.g., National Association for the Education of Young Children, 2011) have released codes of ethics for their members. The same is true for discipline-specific professional organizations. The professional organizations for occupational therapists (American Occupational Therapy Association, 2020), physical therapists (APTA, 2020), speech-language pathologists (ASHA, 2016), and social workers (NASW, 2021) each have ethical codes to abide by when facing ethical dilemmas. These codes of ethics all center around three key themes: that families are the most important part of children with disabilities’ lives, that families and children are all entitled to dignity and respect, and that families and children must be accepted as full societal citizens (Early Childhood Technical Assistance Center, 2017). While existing codes include relevant ethical principles for EIs, the principles do not translate to how EIs should ethically conduct themselves in specific situations.

Given the recently released DEC position statement on ethical practice, the purpose of this study was to explore the ethical dilemmas that EI professionals in one state face and their decision-making process during ethical dilemmas. Our research questions for this study were: RQ1. How do EIs define “ethical dilemma”? RQ2. What ethical dilemmas do EIs face in their day to day work? RQ3. When faced with an ethical dilemma, what types of decision-making processes do EIs use?

Method

We used a sequential mixed methods study design to address the research questions (Creswell & Clark, 2017). We mixed for the purpose of development, meaning that the survey design influenced the interview design, and complementarity as we sought to find and explore similarities between the two data sources (Greene, 1989).

Positionality

Our research team had a variety of professional backgrounds, including faculty members, graduate students, and early intervention providers. There was no previous relationship between the research team and participants. Interviews were completed by graduate students with experience in EI.

Theoretical Framework

We used the ecological systems theory (Brofrenbrenner, 1979) to guide the design of this study. The ecological systems theory suggests that an individual’s behavior is influenced and shaped by a complex level of systems and the individual pieces that make up those systems, including interpersonal relationships, institutions, and policies (Brofrenbrenner, 1979). We used this theory to ground our understanding of how EIs experience and problem solve ethical dilemmas in their work, focusing on EI systems as a whole.

Recruitment and Procedures

After study approval from the university Institutional Review Board, a recruitment email was sent out to all early intervention professionals within one state through that state’s early intervention professional development listserv. Contact information for the director of the state professional development entity and the lead faculty member was included in recruitment materials and in the introduction to the survey. In the email was a link to the survey in Qualtrics; 4,637 people were sent the survey, and a total of 787 agreed to participate in the study and started the survey; 427 respondents completed the survey, leading to a 54% completion rate (427/787). At the end of the survey, participants could select if they wanted to participate in an interview, and 45 indicated interest in an interview. A team member then reached out to each participant to schedule an interview. Interviews were conducted over Zoom with a member of the research team. Interviews lasted for an average of 29 minutes (range 15–52 minutes). Interviews were audio recorded and transcribed professionally and each participant was given a pseudonym to protect their anonymity. Participants were emailed a one-page summary of their interview as a member check (Brantlinger et al., 2005), with a request to share any additional comments or edit inaccurate information. Twenty-eight participants responded to the member check and of those, 10 participants added additional comments or notes to the summary. Feedback primarily was to clarify a point (e.g., “I meant to say”) or add additional context (“something I did not talk about”), while some of the edits were related to grammar or word choice.

Participants

Survey participants

To be included in the study, providers had to be actively working in EI in one U.S. Midwestern state. This state's EI system is organized regionally through system points of entry with dedicated service coordinators and a vendor model of service delivery. A total of 427 participants completed the survey that was conducted over Qualtrics. Participants held a variety of roles in the EI system, including service coordinators, developmental therapists, social workers, dieticians, and related service providers. A majority of the participants were female (n = 386) and worked in the suburbs of a large urban city (n = 192). Additionally, most participants had been working in EI for more than 10 years (n = 285). See Table 1 for additional demographic information about survey participants.

Table 1.

Survey Participant Demographics.

Demographic characteristics	n	%
Gender
Female	368	94.60
Male	13	3.34
Non-binary	1	0.26
Prefer not to answer	7	1.80
Educational background
Early childhood	27	6.87
Early childhood special education	46	11.70
Psychology, social work, or other counseling	44	11.20
Human services or related field	9	2.29
Behavioral science	2	0.51
Social science	4	1.02
Health related field	9	2.29
Allied health professionals	214	54.45
Other	38	9.67
Role
Developmental therapist	94	22.01
Occupational therapist	69	16.16
Physical therapist	63	14.75
Service coordinator	30	7.03
Mental health provider	26	6.09
Speech-language pathologist	103	24.12
Supervisor	10	2.34
Other	23	5.39
No response	32	7.49
Years in profession
Less than 1 year	7	1.78
1–5 years	67	17.05
6–10 years	54	13.74
11–15 years	48	12.21
More than 15 years	217	55.22

Interview participants

Forty-five participants elected to participate in an interview after completing the survey. Interview participants included occupational therapists, speech-language pathologists, developmental therapists, and social workers. Similar to survey participants, most were female (n = 44) and worked in the suburbs of a large urban city (n = 29). Additionally, most participants identified as White (n = 36).

Materials

Survey

The research team developed a 20-question survey based on the literature, professional experiences, and research questions. The survey was developed and piloted with EI content experts who actively work in EI. The purpose of the survey was to explore participants’ ethical dilemmas, experiences with ethical dilemmas, how they define ethical dilemmas, and resources used when addressing ethical dilemmas. Eleven multiple choice or Likert scale questions were aimed at gathering participant experiences with ethical dilemmas. Example questions included “Identify which of the following ethical dilemmas you have encountered in your early intervention work,” and “How prepared do you feel to address the majority of ethical dilemmas you encounter?” Eight questions addressed demographic information, including gender, role (e.g., service coordinator, developmental therapist, speech-language pathologist), service area, length of time working in profession, length of time working in EI, and educational background. One open-ended question asked participants to define ethical dilemmas as it relates to their work (see Appendix A: Survey).

Interview

The interview protocol was designed to explore participants’ experiences with ethical dilemmas and the problem-solving process when they encountered a dilemma. It consisted of seven questions and was developed based on professional experiences working in the EI field and encountering dilemmas. Some questions included “What does ethical dilemma mean to you?” and “When encountering an ethical dilemma, what resources and/or tools did you use to support your response to the situations?.” Additionally, two questions involved reading a scenario pertaining to an ethical dilemma and asking the participant to explain what they would do in this situation and why.

Data Analysis

Quantitative analysis

To uncover groups of EI professionals answering the survey in similar fashion, a latent class analysis (LCA) was performed. An LCA is a model-based method for uncovering unobserved heterogeneity in a population, and for finding groups of persons that are similar in their responses to discrete items on a questionnaire, survey, or test (Clogg, 1995; Nylund et al., 2007). In this analysis, it was desired to group persons based on commonalities with respect to beliefs and attitudes regarding ethics and ethical decision-making rather than on demographics, role in EI system, training, and job status. Then, the LCA was performed with respect to the remaining items. Three of the items included were in “choose all that apply” format.

These items were as follows:

“Identify which of the following ethical dilemmas you have encountered in your early intervention work” (12 options): (a) Boundary issues in the professional–family relationship; (b) Billing dilemmas; (c) Teaming dilemmas; (d) Health and/or safety concerns for children or other family members; (e) Confidentiality dilemmas; (f) Dilemmas on the use of social media; (g) Provider or team member selection dilemmas; (h) Service delivery dilemmas–Philosophical differences in practices; (i) Service delivery dilemmas–(Bias toward certain families; (j) Service delivery dilemmas–(Cultural values and priorities related to parenting/child rearing; (k) Service delivery dilemmas–Use of non-evidence based practices; (l) Policy or programmatic dilemmas).

“What are the top 3 sources of information you use to help in an ethical dilemma?” (7 options): (a) Family member or friend; (b) Information learned through professional development/training as an early interventionist; (c) Professional association code of ethics; (d) Professional colleague; (e) Supervisor/mentor; (f) Training received in school; (g) Other).

“What training and/or resource topics would be beneficial in supporting your early intervention practice as it relates to ethical decision making?” (9 options): (a) Interdisciplinary training; (b) Professional boundaries; (c) Service delivery dilemmas; (d) Confidentiality and privacy; (e) EI Practice Act; (f) Ethical decision making strategies; (g) Implicit bias; (h) Cultural humility; and (i) Other).

To accommodate the analysis, the responses to these items were transformed into a series of binary items indicating whether the participant selected the option or not. Also included was a series of questions (e.g., “How often do you use or reference the following association ethical guidelines in your early intervention work?”) related to nine professional associations’ respective ethics codes: (a) NAEYC Code of Ethical Conduct, (b) DEC Member Code of Ethics, (c) ASHA Code of Ethics, (d) Physical Therapy Code of Ethics, (e) Occupational Therapy Code of Ethics, (f) NASW Code of Ethics, (g) APA Ethical Principles, (h) ANA Code of Ethics, and (i) Code of Ethics–Nutrition and Dietetics Professions.

There were a final four questions:

“How often have you been in a situation that has posed an ethical dilemma?”

“How prepared do you feel to address the majority of ethical dilemmas you encounter?”

“How familiar are you with ethics-based decision-making models to support you in your early intervention work?”

“Specific training and resources related to ethics in early intervention would have a positive impact on my decision making and practice.”

Thus, a total of 42 items were used in the LCA.

Performing an LCA requires the analyst to determine the number of latent classes for the analysis. In the current analysis, there is no a priori number of classes that is expected. To determine the number of latent classes for the analysis, a common approach is to fit the latent class model for several different numbers of latent classes, and then compare fit indices. In particular, it has been argued that multiple fit indices should be reported and considered, with the model with the lowest Bayesian information criterion (BIC) index most preferred (Nylund et al., 2007; Schwartz, 1978; Weller et al., 2020). In the current analysis, the model was fit for the number of classes ranging from one to five. Fit for the five models is summarized in Table 2. Given the range of preferred models across indices, it was decided that BIC should be used for model selection. As shown in Table 2, the model with the lowest BIC was the one with three latent classes; the results from this model are the ones used in further analysis. Classes are characterized by their responses to several items. The model-implied probabilities for the items used in the LCA are given in Appendix B and Figures 1 to 4.

Table 2.

Model Fit for Latent Class Models With One to Five Latent Classes.

# of classes	Log-likelihood	df	BIC	AIC	cAIC	Entropy
1	−1,197.44	345	24,451.53	24,118.88	24,533.53	—
2	−11,644.00	262	24,287.36	23,617.99	24,452.36	0.81
3	−11,372.14	179	24,246.37	23,240.29	24,494.37	0.82
4	−11,201.28	96	24,407.36	23,064.56	24,738.36	0.74
5	−11,085.28	13	24,678.07	22,998.56	25,092.07	0.72

Note. BIC = Bayesian information criterion; AIC = Akaike information criterion.

Qualitative analysis

The open-ended survey question, asking participants what ethical dilemma means to them, was analyzed by three team members. One team member determined a priori codes. Two additional team members independently reviewed each response and assigned a code to each response, then team members reached consensus on each segment. Responses were then divided by the groups identified through the LCA.

The interview transcripts were reviewed and coded by three members of the research team. All three research team members were graduate students in special education. First, an inductive open coding process was used to create the codebook. The three members individually read two transcripts at a time and identified emerging themes by assigning descriptive labels to data segments (Saldaña, 2021). The coding team then met to discuss and review themes to begin establishing the codebook. This process was repeated until eight transcripts had been reviewed and the codebook was established. Afterwards, each of the 45 transcripts were independently coded and the team met weekly to discuss and reach consensus for each transcript. During the second level of analysis, excerpts were separated by codes and reread to ensure appropriate categorization and consistency (Miles et al., 2020). Codes were re-organized as needed and codebook definitions were edited for clarity.

After the initial coding process, thematic analysis was conducted. First, members of the research team reviewed the data as organized by codes and identified themes independently. Then, the three members of the coding team met with one of the lead researchers to review and discuss themes. During discussion, potential themes were identified for each code. The team discussed these findings as well as potential themes that emerged across codes. Through this collaborative discussion, the group agreed upon a consensus.

Results

We present our results from the survey and the subsequent interview. Quotes are de-identified and pseudonyms are used to share information from participants. We begin by explaining a classification process for participants and then proceed to share how participants define ethical dilemmas, resources in ethical decision-making, and discuss the cause and decision-making processes when faced with an ethical dilemma. Then, we discuss themes from the interviews. Throughout, we highlight the ways that the survey and interview data complemented one another.

Survey Results

Results of the LCA on the survey responses showed that there were substantial differences between the participants. Furthermore, these differences can be summarized by three separate classes—which we simply call Class 1, Class 2, and Class 3—that differ in their professional experiences. First, participants in Class 1 are more familiar with ethics-based decision-making models and have more frequent access to tools and resources to address ethical situations than Classes 2 or 3. Participants in Class 1 also used association ethical guidelines more than the other classes, as shown in Figure 1. Those in Class 1 also cite using their professional development and training as being helpful and they report they took a course on ethics more often than the other two classes (54.7% of Class 1 vs. 37.7% of Class 2 and 34.6% of Class 3). Interestingly, Class 1 members are not as experienced in the EI system, and report encountering ethical dilemmas only “sometimes.”

Next, participants in Class 2 encounter ethical dilemmas more frequently, report experiencing a wider variety of ethical dilemmas (as shown in Figure 2), and they are more experienced in the EI system than Classes 1 or 3 (74.6% of Class 2 in EI more than 5 years vs. 64.0% of Class 1 and 62.6% of Class 3). Those in Class 2 are less prepared to handle ethical dilemmas, and report less frequent use of association ethical guidelines than the other classes. Class 2 group members more often cite colleagues as a helpful source for processing ethical dilemmas than those in Classes 1 and 3. Class 2 members are also more likely to feel that implicit bias training would be important compared to the other two classes.

Finally, participants in Class 3 report encountering ethical dilemmas the least often and had less overall experience in the EI system. Class 3 group members are less familiar with ethics-based decision-making models, use association ethical guidelines less often, and are less likely to state they learned about or took a class on ethics than Classes 1 or 2 (73.4% of Class 3 vs. 89.3% of Class 1 and 79.7% of Class 2). More often than not, Class 3 members cite using personal experience as a helpful source for navigating ethical dilemmas.

When participants were asked what an ethical dilemma means as it relates to their work in EI, the most frequent responses across the three groups described ethical dilemmas related to best practice within the field. Participants referenced the professional standards in EI and standards from their specific discipline in order to provide the appropriate services and supports that are in the best interest of the child and family. Across the three groups, participants also described other ethical dilemmas that may arise when there are opposing viewpoints about services or service delivery. For example, professionals had different ideas about how services should look. A participant in Class 2 stated, “The ethical dilemma is meeting the compliance guidelines while being accountable to the families we serve utilizing the tools that we have which may be limited” and a participant in Class 3 stated,

any time where something that is in the best interest of the family may not be in the best interest of my employer, or if I’m in a position when I'm asked about something that may be a gray area regarding my scope of practice.

Furthermore, professionals mentioned disagreeing with families about service delivery and what was realistic versus what was right when supporting child outcomes and goals. To provide more clarity on what this may look like, one participant described this as “competing interests” and another described it as “conflicting viewpoints,” in relation to what should be the main priority for the child. Participants in Classes 2 and 3 frequently noted feelings of a “personal and professional tug of war,” where they experienced difficulties in maintaining balance between what was expected of them in their profession and their personal beliefs and values.

While personal experience versus professional development and training was mentioned more often in Classes 2 and 3, Class 1 frequently described issues of “morality-doing the right thing,” and “maintaining boundaries.” Class 1 detailed how ethical dilemmas may stem from relationships between professionals as well as between professionals and families. This also included responses about staying within one’s scope of practice and using a personal moral compass to distinguish between right and wrong. Other differences between groups surrounded issues such as “systemic failures” and “cultural (in)sensitivity.” For example, Class 3 described ethical dilemmas forming as a direct result of cultural (in)sensitivity more often than in Classes 1 and 2. Dilemmas about “systemic failures” were described more often in Classes 2 and 3 than in Class 1. These responses often consisted of issues that directly impacted care, supports, and services throughout EI as a whole, such as during referral, assessment for service planning, service delivery, and transition. All classes were similar in that ethical dilemmas around mandated reporting and fraudulent billing were frequently described.

Interview Results

Interview participants also discussed how they defined ethical dilemmas. Dilemmas were defined in two ways. First, participants discussed determining an ethical dilemma as an individual decision. They used their own moral compass to decide what is and is not a dilemma. Participant 1 shared,

For me, ethical dilemmas, just when I feel like when you have a personal, internal kind of struggle of is this right or wrong? And it can relate to a lot of things, but really just kind of, I guess the basics would be right versus wrong.

Another participant described a similar process, saying she questions “the moral values of what you're being asked to do, and what you think is right versus what the situation is, and the impact of what your decision is as far as how you proceed.” The second way ethical dilemma was defined was by using a set of policies or guidelines from their field. If the event violated a policy, it was determined to be an ethical dilemma. Policies referred to include the state’s EI provider handbook and discipline-specific guidelines such as the American Speech-Language-Hearing Association Code of Ethics or the National Association of Social Workers Code of Ethics. Participant 2 described this as “going against policy and procedure that would be a total disregard to DHS [Department of Human Services] policy.” Similarly, Participant 3 shared, “Not being able to fulfill my ethical duties as the physical therapist or those ethics that are within my realm of practice are being compromised.”

Causes of ethical dilemmas

Interview participants also shared their experiences with situations that may have caused ethical dilemmas. Causes of ethical dilemmas fell into six categories: roles of team members, relationships between team members, EI logistics, violating policy, inadequate training, and implications from COVID-19.

Roles

EIs shared that the roles of different team members, or lack of clear understanding of roles, led to ethical dilemmas. Participant 4 described a dilemma when EIs from different disciplines have different approaches:

. . . where there are disagreements between therapists and different disciplines and approaches, and it can be confusing for parents. Not to say that one person always knows the best or one discipline is better than the other, but it can be a difficult thing trying to figure that out, and avoid conflict . . .

EIs also indicated that clarity regarding the scope, or extent and limits, of their role led to ethical dilemmas. For example, an EI shared difficulty in knowing how to respond when a parent makes a request that they feel is beyond their scope of practice:

I think that expanding myself into a role, it's not mine to play. This is not my role in the situation. I know that it gets a little tricky because the IFSP is a family service plan. And this being one of the issues the family is coming across, it sort of suggests that I'm here to serve a family and always. But we have to draw the line somewhere. (Participant 5)

EIs also discussed how part of their role as mandated reporters and how decision making in these instances can be difficult, “Do I call DCFS [Department of Children & Family Services]? Is this really a problem or am I making a mountain out of a molehill here?.”

Relationships

Relationships between EIs or between EIs and a caregiver were also described as the cause of ethical dilemmas. For example, the way in which professionals are identified to work with families can be driven by existing relationships rather than needs of the family, with Participant 6 sharing, “I’ve seen service coordinators who don’t select the best fit for the family because of friendships and I’ve been on both ends of that, both receiving ends of that, so I’ve benefited and I’ve suffered from it.” Additionally, EIs may establish relationships with families beyond IFSP services, which in turn impact service delivery and the families’ understanding of EI. Participant 7 described an experience working with a family where in her eyes, another provider caused an ethical dilemma:

This family thought that the provider was working as an EI provider in all the things that she was doing . . . She would bring them food, help them out with rental assistance, until she couldn’t do it anymore. And this person, this family thought that this was part of her job, and it was not a part of her job. She did not want any other therapists to work for her because they were not doing the same things for her. So it gave this mother some unrealistic expectations about what EI was able to do for her.

Early intervention system logistics

EIs also discussed how the EI system logistics led to an ethical dilemma. These dilemmas often occurred due to the structure and function of the vendor system, including supervision, mentoring, referrals, or billing. For example, Participant 8 shared how decisions regarding eligibility determination and decisions as to whether to accept a referral can be made based on factors beyond the child and family, saying “I’ve seen people qualifying children for services who don’t qualify because they are proximal to their location, or because their caseload is low.” Additionally, lack of supervision or mentorship to discuss service delivery challenges or potential ethical dilemmas is a gap identified by EIs who have also worked in other service delivery systems where supervision and mentorship was present. Participant 9 compared her experience working in a medical setting to her time in EI:

One of the things that I have missed the entire time that I’ve been working in the current EI system is the team of, kind of, authority. So prior to the time that I did EI, I worked in hospitals and clinics. And we always had an OT supervisor and a PT supervisor, and a speech supervisor, and family life, and . . . Whatever disciplines were part of the team, there were supervisors. And if there were situations that came up, there was a supervisor that you went to. And the supervisor had authority to say, “You know what, this isn’t how we deal with that here.” And I have missed that a lot in early intervention, because I don’t think that there is a good supervisory, reflective supervision model out there that can help people with their decision making.

Early intervention policies

Another cause of ethical dilemmas referenced by EIs was violations of rules or policies. Several EIs mentioned witnessing or hearing about a potential policy violation and not knowing what to do with the information. Other EIs discussed how a policy can unintentionally negatively impact services for families.

So it’s a huge ethical dilemma because yes, the books say be in the home for 60 minutes. It doesn’t matter if you couldn’t find parking for 20 minutes, you’re supposed to stay for 60 minutes. It’s an ethical dilemma because you should do that. But sometimes that’s going to mean that you’re 30 minutes late to your next family. And then that’s an ethical dilemma too. And you should just bill less time. There’s all these things. (Participant 10)

Training

Inadequate training, either in pre-service preparation programs or through in-service or continuing education, on topical EI practices can also lead to ethical dilemmas. For example, an EI discussed a lack of training related to cultural competence in order to support families, while other EIs mentioned that lack of knowledge about a discipline can lead to tension between professionals when determining how to best support a family. When supporting a family from a different cultural background, Participant 11 stated, “[I am] realizing that's a huge gap in our practice area of not being able to acknowledge that. So again, just feeling, I guess, ethical issues there in terms of our competency to address those issues.”

COVID-19

Since this study was conducted during the COVID-19 pandemic, EIs also shared ethical dilemmas that arose due to the pandemic. These issues included the families negative perceptions of tele-intervention, families leaving EI, and not having access to services due to a lack of technology or internet connection. Participant 12 described a dilemma that arose when the EI system was transitioning from virtual to in person services, and professionals could choose whether or not to provide services in person. She shared:

I am still doing all tele-therapy based, I’m not going into homes yet myself. So I have a couple of situations where there is another provider that’s willing to go into the home, and we’ll do a co-treat while that provider is in the home, and she doesn’t wear a mask, she doesn’t wear gloves, she touches the child, she’s holding him on her lap, and certainly situations like that, that go against the ethics of what we’re supposed to be doing.

Other EIs suggested that the decrease in families receiving services or the EIs ability to provide home-based services has impacted their caseload, and potentially their decision making regarding service delivery.

Well, the hardest thing is helping families find value in online work. There are times where I have felt that I am pushing a family to keep doing the work because I need the work. And the worst thing has been the loss of work. I had 21 kids and now I have five. The need to push for work is really hard and the other thing that’s going on is, “do I go into homes” and I am not going to home, but it’s a real dilemma. The number one dilemma right now is, “do I protect my health to the degree I would like to, or do I go into homes because it's better for kids and because the work is there.” (Participant 13)

Decision-making process during ethical dilemmas

EIs discussed their influences and decision-making processes when confronted with an ethical dilemma. These were grouped into four categories: balancing relationships, both with families and other professionals, aiding families, collaborating with other professionals, and referencing resources.

Balancing relationships

EIs discussed considering their relationships with families and other professionals as part of their decision-making process during a dilemma. When talking about their experiences with families, EIs frequently thought about how to maintain a professional boundary while still supporting the family. Additionally, the strength of the relationship with the family impacted how EIs proceeded during a dilemma. Since some EIs also work in other service delivery settings, such as outpatient clinics or schools, they thought about the long-term relationship with families. Participant 14 shared:

I want to preserve the relationship I’ve already developed with the family because unless something drastic changes, not only will I serve them in the birth to three program, it is possible that I will work with that child at an office and be involved in the case from age three, all the way up to sometimes almost the day they turn 22. Trying to build a good family relationship is really important. And I don’t want to mislead them about what I think is realistic to ask my districts because I know what the district may or may not say with certain situations.

Similarly, EIs also discussed balancing relationships with other professionals during a dilemma. The strength and history of the relationship with the other professionals influenced the choices they made. Sometimes, the dilemma involved both the family and other professionals, so EIs were challenged with creating the family and professional relationships, and decision making. Participant 15 shared:

But then on the other side, you don’t want to be ratting out other professionals and saying that’s not what you’re supposed to do, because then that could ruin any rapport that you have with the other professionals or their relationship with the family or your relationship with the family. But do what’s right, and making sure that the child gets those services . . . would be my priority.

Aiding families

In some instances, there was a clear priority to aid a family and ensure that they understand their rights. In doing so, this became the primary factor in deciding how to approach an ethical dilemma. Participant 16 shared,

Mom will share with me that whichever service provider has been ongoing has been very irregular with their time and not really respecting the families schedule . . . I will educate the family. I'll say you have a right to the same time every week and not have this kind of loosey-goosey stuff. If that’s what you prefer when it's your right and your obligation to advocate for your own child.

Sharing resources or information with families was another way that EIs described aiding families. When discussing when an EI should make a call on behalf of a family or share information with the family so that they can be supported to make the initial contact, Participant 17 shared, “I might say, ‘Well, you could call this person at the school and they might be able to help you’. So being more of a resource person rather than making the phone call.”

Collaborating with other professionals

EIs discussed seeking advice from a colleague or team member when they faced an ethical dilemma. This was described as a strategy to gain another perspective on an issue, to make someone else aware of the situation, or to gather more information.

So that's where it would go back to the service coordinator about “You need to get to the bottom of this. Is it a misunderstanding on the part of the therapist? Are they purposefully cheating, fraudulent billing?” All of that. If the service coordinator wasn’t comfortable with it, even though they should be, then I would take it to the next step, which would be the [program manager] of the CFC. (Participant 18)

EIs also discussed collaboration challenges and specifically identified a lack of supervision. Several EIs stated that they did not know who to go to or that they did not feel that they had anyone to go to when they had questions. Other EIs referred to the value of specific disciplines when seeking advice or when having a conversation with a family, “If there’s a social worker on the team, I’d like to have the conversation with the social worker there too, just because they have more training in having those difficult conversations than we receive as therapists” (Participant 19).

Referencing resources

EIs discussed the resources that they turned to when gathering information on how to proceed when facing an ethical dilemma. Many identified the EI Handbook or practice manual and the EI website, as well as resources from their discipline-specific professional organizations. Others sought out training on mandated reporting after being in a situation where a potentially reportable incident occurred. EIs sought information from a combination of resources and colleagues, such as Participant 20 who shared: “I went to the practice manual for early intervention, I guess that was sufficient, but that was because I had colleagues who were experienced and we're able to really talk with some good solid answers.”

Desired resources

The last theme from the interviews involved EIs identifying resources that would be helpful when facing an ethical dilemma, but that are currently not available. These resources included printed documents as well as someone who could discuss a situation with the EI. EIs cited the lack of state-level guidance, along with a need for additional resources:

I don’t think that EI has any type of guidelines for ethical issues. Each thing is taken on a case by case basis, and we try to handle it at the [local] level before it gets to the state level. But there are actually no guidelines, so if someone crosses boundaries, it’s usually just a conversation in how we're going to work it out. (Participant 21)

Several EIs suggested the idea of a hotline to call to both ask questions and to anonymously report ethical concerns. Additionally, professionals discussed the importance of having training on ethics as part of the credentialing process, and the implications of not having ethical practices. Resources were also requested for specific situations, such as billing. There was recognition of training that already exists, along with additional suggestions to move from procedural training to training which would support more practical application and problem-solving.

Discussion and Implications

This study sought to understand how EIs define ethical dilemmas, explore ethical dilemmas faced by EIs within the field, understand their problem-solving processes, and identified needs for support. Findings are of notable importance as this study provides results that can be used to transform existing EI practice and policy and increase the provision of high quality EI services.

Defining Ethical Dilemmas

Participants in this research study shared how they define an ethical dilemma. The definition of ethical dilemmas varied greatly and was uniquely tied to the individual participants’ own values, beliefs, understanding of policies and procedures, and connection to ethical codes and guidelines. Participants discussed defining an ethical dilemma by their own personal standards, using their own moral compass to make decisions on what was ethical. Conversely, other participants viewed an ethical dilemma as something that violates a code of ethics or guidelines from their respective field (i.e., APTA, 2020; NASW, 2021). These differences in views on how to define a dilemma can lead to conflicting viewpoints amongst professionals as to what constitutes a dilemma and how to approach it. Notably, the definition of what constitutes an ethical dilemma is highly dependent on the EI provider’s perspectives on what is in the best interest of the child and family. Future research is needed to identify a shared definition of what constitutes an ethical dilemma.

Teaming and Collaboration

EI personnel are often nested within multidisciplinary teams where all members use their specialized expertise to achieve a shared goal of providing family-centered care. Aligning with findings from a previous study, ambiguous roles, blurred understanding of personal responsibilities, and other interpersonal conflicts often resulted in some of the ethical dilemmas faced by participants (Able et al., 2017; Corr & Santos, 2017). Future research can explore successful models of teaming and collaboration in EI and how improved collaboration can lead to increased ability to navigate ethical dilemmas, ultimately improving the quality of EI services, and the likelihood that all children will have access to equitable, inclusive services.

EI System Enhancements

Previous research has indicated the need to enhance EI systems to further improve the quality of services that children and families receive (Bruder, 2010). Based on data collected in this study, state EI systems may find it beneficial to create codes of ethics that reflect the values of the state system, can guide EI professionals work and can provide a common set of expectations that cross discipline boundaries. In addition, states should consider the breadth and depth of resources available to EIs as they navigate ethical dilemmas in practice. The DEC (2022) Position Statement on Ethical Practice, along with discipline-specific codes of ethics, can be utilized as a foundation to support EIs in understanding the broad principles and practice guidelines for supporting young children and their families. However, data from this study clearly identify the need for additional resources, support, and learning opportunities to guide application and problem solving. These may include webinars, example scenarios, problem solving processes, opportunities to reflect in community with other EIs, and focused technical assistance around challenging ethical dilemmas.

Limitations

There were three important limitations to this study. First, the participants in this study were all from one Midwest state and worked in the same EI system. Because EI services and systems differ between each state, the ethical dilemmas these EIs experience may not be representative of those in other states. Additionally, the majority of the interview participants were white women; they may face different ethical dilemmas, while not facing others (e.g. racism, stereotyping, aggression, dismissal), due to their gender and race. However, this sample is reflective of the demographics of the EI workforce as a whole in the Midwest state the study took place in which contains a combination of rural, urban, and suburban communities. Second, the participants that chose to participate in this study may have had a special interest in ethical dilemmas, and their principles and experiences may differ from those who did not choose to participate. Nonetheless, this study provides insight into the ethical dilemmas that EIs face and contributes to the literature in this area. Finally, the original scope of this research did not include the ethical dilemmas resulting from the COVID-19 pandemic; however, due to the timing and open-ended nature of the study, COVID-19 was repeatedly a topic of interest to the interview participants. The study was designed before COVID-19, and surveys were conducted just prior to the onset of the COVID-19 pandemic. Interviews took place right after the initial quarantine periods began in spring 2020. Although this study was not an intentional look at ethical dilemmas presented in the wake of the coronavirus pandemic and interviews took place in an unprecedented and rapidly changing time, this study did provide unique insights into the world of EI including during the recent pandemic.

Conclusion

EI personnel work within complex systems of service, providing services and supports to young children who have or are at-risk for developmental delays and disabilities and their families, and as such, require a diverse set of skills and knowledge to be effective in their work. Further research should explore EIs’ perspectives on what should be included in a code of ethics, the efficacy of ethics-focused professional development opportunities, resources and support, including to what extent knowledge and skills were acquired, and to what extent new knowledge and skills are applied in practice.