Course:PSYC537/2010WT1/Vignette7

VIGNETTE 7

You are a psychologist practicing in a tight-knit rural community and are accustomed to administering cognitive and personality assessments. You are consulted by a 30 year-old woman and her 6 year-old daughter who were referred by the family’s physician for an assessment of the child’s developmental delays and possible autism. You had a limited amount of experience screening for autism spectrum disorders during your internship, but in the past 6 years you have not seen any children with autism. You are aware of the family’s limited resources, which includes sharing transportation with a member of the extended family. The nearest large metropolitan centre is 4 hours away.

STEP 1: Who are the people potentially affected by decision?

the 6 y.o. girl, the 30 y.o. woman (mother), their family (direct and extended), the referring physician, you, the global community. (JK)

Just a couple of elaborations on Janet's points:

-Global community: specifically children and their families that are in a similar situation in your community. Your decision could set a precedence for people who are seeking professional assessment of autism disorders.

-Family physicians in your community: since most of these cases are referred by family physicians, your decision could set the norm for similar referrals in the future, or change the way that such referrals are made in your community. (CC)

STEP 2: What are the relevant ethical issues/laws? Which ethical values/laws are in conflict?

1) APA standard 2.01- "Psychologists provide services, teach, and conduct research with populations and in areas only within the boundaries of their competence" 2) CPA standard II.6 - "Offer or carry out (without supervision) only those activities for which they have established their competence to carry them out to the benefit of others" 3) CPA standard II.8 - "Take immediate steps to obtain consultation or to refer a client to a colleague or other appropriate professional, whichever is more likely to result in providing the client with competent service, if it becomes apparent that a client's problems are beyond their competence" 4) CPA standard II.17 - "Not carry out any scientific or professional activity unless the probably benefit is proportionately greater than the risk involved" 5) CPA standard II.31 - "Give reasonable assistance to secure needed psychological services or activities, if personally unable to meet requests for needed psychological services or activities" (AA)

Also, according to the BC Provincial Health Services Authority, all clinicians must use the same guidelines and standards as outlined by the British Columbia Autism Assessment Network (BCAAN) to decide whether a child or youth has Autism Spectrum Disorder. Registered psychologists, psychiatrists and peditricians may provide private assessment, however assessment made outside of BCAAN must adhere to the same guidelines and standards in order to be eligible for funding from the Health Ministry. (CC)

In addition, there is great potential for dual relationships because the therapist is located in a rural community. In this case, the therapist should be especially aware of the issue of confidentiality. (SC)

Further, there is the individual's equal right to benefit from the contributions from the field, to not place an individual needing services at serious disadvantage (in this case, the distance and little resources to get to the metropolitan center could contribute to this). Striving to provide or obtain the best possible service and promote the welfare of the client. (JK)

STEP 3: How do personal biases, stresses or self-interest affect my choice of action? Having worked for a year providing ABA therapy to a girl with autism I grew really close to both her and her family and I think this would definitely bias how I handled the situation. Having the label "autism" really helped the family deal with the situation and explain it to other people in their life so I would really push for the family to get this assessment done. One thing they continued to find frustrating however was trying to understand exactly what their child was capable of and how much improvement they could hope for. Because of this I would want this family to receive as much information as possible about their child and have this information be as accurate as possible. As a result I think I would heavily favor the idea of them going elsewhere to have this assessment done so they could get a more expert opinion. (HM)

The therapist’s personal level of confidence in his/her ability to assess autism despite the lack of training can affect his/her choice of action.

The therapist may also be influenced by any pre-existing dual relationships between himself/herself and the mother or the child.

As the sole mental health practitioner in the rural community, the therapist may feel pressure from the community and/or from himself/herself to take on the assessment.

The therapist’s personal opinion regarding the level of competency of the practitioners in the nearest metropolitan center can affect his/her willingness to refer the client. (SC)

STEP 4: Consult with colleagues.
Consultation with clinical psychologist practicing in an urban area: The psychologist emphasized the importance of including the client in treatment and assessment-related decisions, and as such suggested an option where the practitioner would emphasize to the client the risks and benefits of doing an assessment with them (explaining your experience, but that you are not an expert, and what care they could receive from someone else) and let them play an active role in the decision-making process. If you did end up doing the assessment, the person I consulted with emphasized the importance of reading up on the assessment literature and consulting with others more knowledgeable in the field. They also suggested the use of non-interview techniques (such as parent self-report of symptoms) to be of use in the diagnostic process, which would be less likely to be influenced by your lack of experience in the field. (SV)

Consultation with speech therapist in Québec working with children with developmental difficulties and delays, including autistic children and children with other pervasive developmental disorders: First she notes that the face of autism, that is the knowledge and understanding of autism is constantly evolving, and that the disorder can manifest itself in a large range of ways and in various degrees. It would therefore be important to do a lot of research and be up-to-date on recent literature in the field, in addition to consulting with specialists. Further, she commented that evaluating the child individually in your office would give a narrow view of the issues and you’d be likely to be missing the whole picture. She strongly recommends going to observe the child in her daily living, i.e., at school and at home. Issues are more likely to become evident when the child is interacting with others. You should also speak with the 6 y.o.’s teachers and parents to collect more information. This should include discussing the child’s past behaviours to get at the history of the problems (for instance, some things may have appeared at a younger age and now changed). This extensive research should be documented and detailed in a report, in which you would indicate what disorder (if any) you suspect. Whether you decide to finalize the diagnosis yourself or send the family to a specialist to confirm the diagnosis, this report will serve well and help to better assess the developmental problems (and make the job of the specialist easier). You do need to be aware of your limits and if you do not feel comfortable and competent to finalise the diagnosis, you should refer the client for one (or a few, as necessary) assessment sessions. The speech therapist also notes that even with referrals it may take time (about a year) before having a diagnosis, and therefore interventions should begin prior to having a firm diagnosis. (However, an assessment should be done and a diagnosis finalised, also to help with getting government financial aide.) She suggests that with the help of consultation, you can speak to teachers and parents about how to help the child in her daily context. Or, depending on the severity of the case, you could train, coach and supervise a special educator that would assist the child throughout the day. (JK)

Consultation with clinical psychologist working in BC: This psychologist suggested that they would help me arrange a referral to a qualified professional, even if this means that the family will have to make a long commute. In her opinion, diagnosis, especially pertaining to DD/autism, is critical to appropriate treatment/management, and will also shape the responses of family, teachers, and others toward the child. Thus, the consequences of the child being labeled autistic when she is not, or conversely, not being identified as autistic when she is, are substantial. Autistic spectrum conditions are difficult to diagnose under the best conditions, and unless she was well qualified, she would not want to risk an incorrect diagnosis. She also suggested that I may want to help the family identify resources (e.g., Social Services) that could help fund/facilitate their trip. (KA)

Consultation with a clinical psychologist who specializes in working with individuals with ID in Ontario: She noted that there were multiple issues to consider in addition to competence, time frame, and money issues that I had originally suggested. First, given the issue of differential diagnosis, and the training required to conduct the ADOS, she suggested that I could do the IQ part if I was competent to assess children but not the ADOS part. The ADI-R is a structured interview which requires less training but is not the gold standard. Some psychiatrists diagnose autism quite readily using the DSM criteria and this would be covered by OHIP although the ADOS is still the gold standard. Given the child's age, time is important and so this might outweigh the financial and transport concerns.... therefore she would refer on to a colleague to do an ADOS. I could still certainly provide info re. the cognitive assessment results and point out the advantages of early diagnosis by a trained professional. (KA)

Consultation with a speech therapist who has extensive experience working with children with developmental disabilities. She suggested the following. Start by consulting your nearest colleague (presumably in the metro area) who you know and who knows about autism. Consider a video assessment teaming with colleague in the metro area. It would be good for the psychologist to get some training since you are in a small town, is there some way you could team with someone in the metro area who could meet with both you and the family together? Now there are standardized assessment tools for autism you could admin and video and then review the video with colleague. Definitely don't want to make the diagnosis in isolation ie you need team input somehow.

She also provided a resource on diagnosing ASD. see pf 6 of http://www.health.gov.bc.ca/library/publications/year/2003/asd_standards_0318.pdf Detailed clinical diagnostic assessment by a pediatrician, clinical psychologist, or child psychiatrist (See Sections 7.2.1 and 7.3.1). This involves: i) detailed history covering development and presenting concerns; ii) review of all community referral materials and previous assessments; iii) consultation with other professionals and disciplines involved; iv) use of a standardized, structured, caregiver ASD interview; and, v) use of a standardized, structured ASD observation instrument. A standardized diagnostic interview with the primary caregiver/parent(s) and a standardized observation of social and communicative behaviour and play are necessary components of a diagnostic assessment for ASD. (See Section 7.2). (HM)

This is the response from a BCPA forum member: "I would tend to conclude that a psychologist is not competent to carry out an assessment for an autism diagnosis without specific training, and consequently would recommend the following in this case:

The psychologist should refer out to a competent service in another location because:

   1. a clear diagnosis must be made;
   2. the implications for such a diagnosis are far reaching, beyond the impact on the family/community itself;
   3. there are significant educational advantages to students with this diagnosis, including special educational support for which the school district receives $18,300 per year from the Ministry for each student with this diagnosis;
   4. there are disability benefits available to families and individuals for student loans and grants, pensions, tax relief;
   5. there is the possibility of significant benefits throughout adult life through Community Living BC for individuals with autism who qualify under either the PSI program or as persons with mental retardation;

All of the above considerations would argue for a competent and convincing diagnosis, and it would be important for the rural psychologist to inform the family, indicating that either obtaining volunteered transportation or investing in transportation to such a service would be a good choice. If such an assessment does not result in an autism diagnosis, the findings would still potentially be useful in devising the child’s educational plan in school.

I think that the primary ethical issue is one of competence, and that good case management needs to be applied to the problem before exploring all potential ethical issues. Theoretical ethical issues can potentially divert one’s thinking from clear case management." (SC + AH)

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Another BCPA forum member consult:
-Colleague's conclusion: Referring is the preferred choice. The second-best option would be to receive training, and then do the assessment with supervision. Since the therapist is already trained in cognitive assessments, and has had some autism experience, he/she should be able to learn the autism assessment quite quickly (only a few hours). It is not uncommon to wait for assessments for a few months (especially in a rural community).
Other reactions:
-Option 1 is not a viable option, due to competency issues. Informed consent does not guarantee competency.
-Driving the client to another practitioner is not an option, due to boundary issues. (Option 5) Also, this colleague said that people living in rural communities are used to driving long distances to get special services, so the 4-hour distance may not be a big barrier since it is a one-time assessment. To paraphrase: 'It is not your job as the professional to solve the problems, just to give clients feasible options.'
(SC + AH)

Consultation with a registered clinical psychologist in Vancouver who specializes in working with children and youth and has extensive experience in autism assessment and treatment. She believes that the primary ethical issue is the psychologist's competence in conducting diagnostic assessment for autistic children. Based on the vignette, she thinks that the psychologist is clearly practicing outside of his/her domain of competence. Someone who only has a limited amount of experience screening for ASD 6 years ago should not be considered qualified to conduct such assessment, even with supervision. The primary reason is that the standard diagnostic guidelines and procedures (go to the BCAAN website for more information on diagnostic standards) are much more complex and usually requires extensive training. While the wait period for referral may take a few weeks to a couple of months, the time involved in getting appropriate supervision and training may take just as long or even longer. Also, early detection is extremely crucial in providing the autistic children with proper care and treatment. Therefore, she suggested the child be referred immediately to a qualified professional in BCAAN, who has had extensive training in assessment and is familiar with the assessment standards and protocols. BCAAN includes specialists and health care professionals throughout the province, and thus you can help the family locate one in the nearest region. However, she suggested that since the psychologist is specialized in cognitive and personality assessment, it might be possible for him/her to conduct certain parts of the screening assessment that have a strong cognitive and/or personality component, but only with appropriate supervision and training using the BCAAN standards and guidelines. Additionally, she stressed the importance of making an accurate diagnosis, not only is it an important issue that will affect the family tremendously, but also due to legislation reasons, that assessments that are conducted by practitioners outside of BCAAN will not be eligible for government funding/tax reduction for the family unless such assessment is conducted with stringent adherence to the BCAAN standards and protocols. Another factor to consider is that the diagnostic standards and protocols are different for children below and above the age of 6. Additionally, she suggested that the psychologist should consider what his/her role is in this situation, what he/she can do to help and support the child and family that is within his/her scope of practice. For instance, she mentioned that since the child's condition will not likely change significantly even after an accurate diagnosis is made, while making an immediate referral to a qualified professional, the psychologist should consider making himself/herself available for counseling with the family, providing assistance and support for the screening assessment (e.g., making school visits), connecting the family to local resources (e.g., speech and language therapy, child support system), serving the bridge of communication between the local resources, qualified professionals and others in the assessment/treatment team, providing follow ups on the child's condition and etc. Also, she mentioned that even if autism is not diagnosed in the child, the child and his family may still suffer as a result of his developmental delay, and therefore the psychologist can continue to offer help and support for the family. (CC)

Consultation with a clinical psychologist specializing in anxiety. This psychologist agreed with my recommendation to set up a videoconference with a psychologist who is competent in that area of assessment to assess the child. One of the risks of this option is that the rural psychologist might not have the technology to set up a teleconference. If this is the case, the psychologist I consulted with recommended checking if the local hospital or mental health centre had the proper technology, as there is a growing movement toward telehealth in BC. Upon consulting with another clinical psychologist, specializing in depression, he also agreed with the videoconference option, as it provides the client with the opportunity to receive the assessment from a psychologist competent in that area. He advised to separate the assessment and therapy components in this vignette. He suggested first getting the assessment done over videoconferencing and depending on the diagnosis, deciding how to proceed after that. (AA)

STEP 5: Develop alternative courses of action.

1. Give the assessment after having obtained informed consent (explaining lack of recent experience with autism assessment).
2. Refuse to give the assessment and explain the reason for refusal (not competent in this area, not comfortable with the assessment, etc.).
3. Postpone the assessment and consult with a professional familiar with autism.
4. Conduct assessment with supervision.
5. Refer the child to a practitioner in the metropolitan center and drive them there (or find alternative transportation) if they lack transportation.
6. Video-conferencing may be an option depending on the nature of the assessment, and availability of equipment, whereby the child would be assessed by a professional practicing in this area over the secure channel. (This choice may involve actually purchasing the necessary equipment.)
(AH)

For option 2, if you decide to refuse to give the assessment, when explaining the reason for refusal, it is important that you communicate in an empathic and supportive manner, the family probably has a lot of hope when they come to see you, you do not want to make them feel disillusioned or abandoned. You could also consider making yourself available for counselling with the mother, providing support to the family, connecting them to local resources and support system (e.g., Speech and Language therapy, supported chid care), and regularly following up on the child's therapeutic progres, provided that you have their consent to do so.

For option 3, given that there is usually a sense of urgency in making autism diagnosis, that the family needs to know about the condition their child is in, and they might also be expecting government funding for the diagnosis. I would make an immediate referral even though it usually takes a couple of months of waiting, while consulting with a professional about what I can do for the child and family that is within my area of competence during this wait period. Meanwhile, connecting the family with a local peditrician or professional who has more experience working with developmentally delayed children is another good option.
(CC)

For option 5, during the wait-time for the referred assessment appointment in the metropolitan center, you could also consider taking steps to advance the assessment, such as documenting behavioural observations (at school, at home), as well as documenting others' (parents, teachers) report of the child. The specialist(s) in the metropolitan center cannot do this leg work that could yield important information to the case. (JK)

STEP 6: Analyze likely short-term, ongoing and long term risks and benefits of each.
1. PROs: The client will receive care and not have to burden their other family members by going to the city center for treatment. This may ease the stress on the family overall, resulting in a better overall outcome for the child. Since you will know about the outcome of the assessment, you may be able to provide them with better long-term care.
CONS: Despite warning them, you may be practicing outside of your area of competency and can leave yourself liable if things go wrong in the future. You may misdiagnose the child, potentially resulting in unsolicited stigma towards the child and a poor quality of life. Your reputation in the town may be negatively affected.
2. PROS: You will not be practicing outside your area of competency and avoiding the risk of misdiagnosing the child.
CONS: The family may not understand your reasons and may think you are discriminating against them for any number of reasons, damaging your relationship with the family. Without your advice or referrals, they may not want to go seek help in the city centre and go without the help that they may require. They may require the assessment for various government and educational support and be either left without help, or need help from their family members, stressing the whole family system. Again, this may negatively affect your reputation in the town.
3. PROS: You will be able to somewhat increase your competency in this area while also obtaining the pros indicated for option 1.
CONS: Again, the family may require this assessment and not understand your need to delay, resulting in similar cons to option 2. Additionally, given the age of the child and if she has autism, she may benefit from intervention as soon as possible. Delaying as such may negatively effect her developmental outcomes. Even after consultation, you may be practicing outside of your area of competency, resulting in similar cons to option 1. (KA)

4. PROS: You will learn how to perform this type of assessment, so if you are ever in this situation again, you will feel more competent to assess children with autism. The mother and child will not have to travel as far to receive the assessment.
CONS: There will be a financial cost associated with supervision, and it may take some time before you are able to find someone able to supervise you. The child may not receive the level of care that a practitioner who specializes in autism assessment would be able to provide. Your level of skill may still not be very high after this one experience, giving you a false sense of competency. IF you misdiagnose the child, the ramifications to the child's well-being would be significant and long-lasting. Your professional reputation may also be damaged.

5. PROS: The assessment will be performed by a qualified and competent individual, which is important when identifying a child as autistic or not. By not engaging in an area where you are potentially incompetent, your professional reputation does not risk being damaged.
CONS: The mother and child will have to travel to the metropolitan center, which may dissuade them from going. There may be a wait-period as you search for an appropriate and available practitioner to refer them to.

6. PROS: The child could possibly be assessed by a specialized professional through teleconferencing, and so would receive a more competent assessment than you could provide without much training. The mother and child would not have to travel to the metropolitan area. The equipment could be used at other times when a client's needs are outside of your areas of competency, which could improve the community's access to mental health care.
CONS: The assessment may not be possible through this medium. Or, the practitioner's assessment may not be as effective/valid without face-to-face contact. Additionally, the financial cost associated with procuring the equipment could be great and the equipment could become outdated, or not be used enough to justify the cost.
(AH)

STEP 7: Choose course of action after conscientious application of principles.

I think I would choose to refer the client to a psychologist proficient in assessing autism in the nearby metropolitan centre. This is my step-by-step procedure:

1. Find a psychologist who is competent in assessing autism and who is available and willing to do the assessment soon. This can be done through BCAAN if this vignette takes place in BC. If it takes place outside of BC, I will try to find a BCAAN equivalent for that province, state, or region.

2. Secure carpooling. I imagine this to be a difficult step but not impossible. It is quite likely that the people living in the rural town often drive out to the metropolitan centre for various reasons and would be able to take the child and mother with them. When asking people whether they’d be willing to carpool, I’d ensure that the confidentiality of the child is maintained and I will not reveal the reason for their visit to the metropolitan centre. While I am looking for a mode of transportation, I will also describe the client’s situation to any social services in the rural town in hopes that they can also try to obtain transportation for the client and her mother.

3. Bring the child and her mother into the office to tell them my decision to abstain from doing the assessment myself and to refer the client. I will also tell them the reasons for this decision which are that I lack the necessary knowledge to conduct a thorough and competent assessment and it is very important for the welfare of the child to have a proper assessment. I will also tell them that I have arranged for a psychologist to conduct the assessment in the nearby metropolitan centre and have secured carpooling. I hope this information will encourage them to go through with travelling to the metropolitan center for the assessment. I would also address any concerns or questions the client and her mother may have at this point.

4. Assuming they agree to go for the assessment and did complete it in the nearby city, I will bring them in for another session where I will ask for any feedback from them regarding the process and whether they need additional psychological services. If they need further services at this point and these services fall within my bounds of competency, I will take on the client. If they need further services at this point and these services do not fall within my bounds of competency, I will go through step 1 through step 3 for this new request.

STEP 8: Act with commitment to assume responsibility for consequences.

STEP 9: Evaluate results of course of action.

STEP 10: Assume responsibility for consequences, including corrections or re-entry into decision making process if still unresolved.

STEP 11: Take action, as warranted, to prevent future occurrences.
Important prevention steps would include staying up-to-date on relevant assessment literature for a wide variety of issues, if only so that you can accurately diagnose clients and, if necessary, refer to treatment elsewhere (as it is impossible for one practitioner to be competent to treat every single client). Hopefully, if assessment indicated the need for treatment in a less convenient setting, the client could at least be adequately informed of the risks and benefits associated with treatment for their particular condition. Also, making sure to maintain up-to-date and thorough information on providers in the area, so that, if you felt you were not competent to do an assessment, you could have different providers to turn to for consultation, supervision, or referrals. Finally, fostering teleconferencing and other technological means to access quality care that may be geographically distant would permit you to continue your training, as well as creating opportunities for rural and otherwise remote clients to receive quality, competent care. (SV)

Another important preventive step would include educating the family physician who referred the child to you about the referral processes for children who are suspected of having autism. Since many people who do not work with autistic children may not fully understand the importance and challenges involved in making an accurate diagnosis. This issue is particularly pertinent in BC, that families can only receive government funding if the diagnosis of autism for their child was made by a qualified professional or a professional who strictly adhere to the guidelines and protocols of BCAAN. Therefore, an accurate diagnosis carries enormous emotional and psychological as well as financial consequences for the family. It is important to inform the family physicians in your community that you are not the right person for referral for similar occurences, simply due to your lack of competence in making diagnosis, and also stress the importance of sending the child to someone who is a qualified professional in this area. You could provide family physicians in your community a list of qualified professionals and their contact information. And you could also consider making yourself available for consultation, contacting qualified professionals, conducting part of the assessment that is clearly within your area of competency (e.g.,certain cognitive aspects of the assessment), connecting the family to the local support system (e.g., social worker, family support),and making school visits. (CC)