Complex care for special kids
May 8, 2017 10:16 AM Subscribe
How does case management usually work for kids with complex needs?
I have a child with a long list of diagnoses and challenges. Kid's therapist (KT) is also the case manager and has been meeting with me. There are other people on the in-house team, too. KT and I work together to make decisions about those services, *in addition* to medical supports, medication, school and the other parent. KT now wants to move me off to work with a behaviour support professional (BSP). But BSP is qualified for behaviour support, not for making decisions about those other things. KT has 20 years of experience -- BSP has a bit of behaviour experience, but is not remotely qualified for the other pieces. We do need the behaviour support and I'm glad this person is on the team - but now I am not going to get help with the other pieces! I am especially concerned about making decisions about the other parent, because kid and other parent are struggling (possibly because KT is having the other parent work with a really inexperienced and unqualified counsellor -- other parent has brought this up repeatedly).
I am so very upset at the prospect of not getting to work directly with KT. KT is still the overall team manager. These are super difficult and important decisions. It seems to me that KT has a big incentive to push me down to a junior, because they can make $150 an hour profit on that time. Moreover, given past ethical conflicts, now I'll be working with a junior who is dependent on KT for their job, so I feel like now I have less advocacy support!
In all the years that kid has needed support, I have always had a medical person (psychiatrist, R.Psych, etc) with whom I work weekly and who really knows my kid. These have always been senior people with advanced training. I am really worried about this scenario. I feel like this would be comparable to stopping working with an oncologist and having to work with a medical student, in terms of skill level drop in cancer management. So the medical student may have skills and availability, but they certainly aren't an oncologist, you know?
I have a child with a long list of diagnoses and challenges. Kid's therapist (KT) is also the case manager and has been meeting with me. There are other people on the in-house team, too. KT and I work together to make decisions about those services, *in addition* to medical supports, medication, school and the other parent. KT now wants to move me off to work with a behaviour support professional (BSP). But BSP is qualified for behaviour support, not for making decisions about those other things. KT has 20 years of experience -- BSP has a bit of behaviour experience, but is not remotely qualified for the other pieces. We do need the behaviour support and I'm glad this person is on the team - but now I am not going to get help with the other pieces! I am especially concerned about making decisions about the other parent, because kid and other parent are struggling (possibly because KT is having the other parent work with a really inexperienced and unqualified counsellor -- other parent has brought this up repeatedly).
I am so very upset at the prospect of not getting to work directly with KT. KT is still the overall team manager. These are super difficult and important decisions. It seems to me that KT has a big incentive to push me down to a junior, because they can make $150 an hour profit on that time. Moreover, given past ethical conflicts, now I'll be working with a junior who is dependent on KT for their job, so I feel like now I have less advocacy support!
In all the years that kid has needed support, I have always had a medical person (psychiatrist, R.Psych, etc) with whom I work weekly and who really knows my kid. These have always been senior people with advanced training. I am really worried about this scenario. I feel like this would be comparable to stopping working with an oncologist and having to work with a medical student, in terms of skill level drop in cancer management. So the medical student may have skills and availability, but they certainly aren't an oncologist, you know?
While this may initially seem frustrating, it could be that this will work out better for you and your child. If the Kid Therapist has determined that at this point a behavior support specialist would be more useful to your child than therapy, this would free up KT's time to focus more time on the case management aspect of things. In my experience, if KT is the team lead she will remain your contact for those other needs that you are concerned about losing. From your phrasing, I am inferring that you are not in the US, but feel free to correct me if that is an incorrect assumption. I am located in the US, so this advice is mainly US-centric, although I do have some experience with the Australian system, as well. In the programs in which I have worked, there has been a designated case manager/team lead/service facilitator whose sole role is service coordination. I cannot imagine a team lead situation where the therapist holds a dual role as the service coordinator, but I am happy that the configuration has worked for you so far. It can be nerve wracking to have to put your trust in a whole new person, but in general, behavior support professionals tend to have just as much schooling and training in their area of expertise as the therapist does. In addition, the behavior support folks that I have seen and worked with have additional training in consultation skills, in order to support your child across sectors, in school, other activities and/or child care settings. BSPs have the skills to share information about supporting your child with teachers and other folks. I also want to encourage you not to think of the BSP as a med student vs. oncologist. It may be more useful to think of it as surgeon (KT) vs physical therapist (BSP). The physical therapist helps you recover AFTER the surgery has taken place, and the physical therapist knows a whole lot more about that than the surgeon does.
posted by Gyre,Gimble,Wabe, Esq. at 2:05 PM on May 8, 2017 [1 favorite]
posted by Gyre,Gimble,Wabe, Esq. at 2:05 PM on May 8, 2017 [1 favorite]
Response by poster: Thanks. I'm not worried about the behaviour support person as a contact for working out plans around the school and so on. But I am very worried about this person having to help me make decisions around inappropriate parenting allegations, parental alienation, choice of school, medications, etc. I think you are right about the dual role and, from my last question, I think the KT was probably getting too stretched and reacting to me with anger and lies, because they felt overwhelmed and frustrated. And I think the behaviour person will be a huge help. But those other gaps are really huge and I don't think the BSP can help me figure out things like re-introducing the other parent and so on. KT has also assigned a really terrible therapist to the other parent and it feels like she's written them off. So the other parent isn't getting proper support/guidance and then I'm having to make decisions about that skills gap, perhaps resulting in a fractured relationship with the other parent. KT previously supported me through this and now I don't know what on earth I should do about the other parent.
To clarify, it's me losing the direct contact with KT. It's not that Child is losing the KT.
posted by shockpoppet at 2:16 PM on May 8, 2017
To clarify, it's me losing the direct contact with KT. It's not that Child is losing the KT.
posted by shockpoppet at 2:16 PM on May 8, 2017
This thread is closed to new comments.
posted by Melismata at 11:37 AM on May 8, 2017 [1 favorite]