For high school students with Special Education services, team meetings should address plans for post-secondary education, employment, and living options, as well as the type of support required for success in these areas. During Tina’s meeting, there was something about her non-verbals that made me think she was excited about the prospect of all the things we were discussing, with the exception of one significant detail. I suspected it was about who would be cast in the role of “Personal Care Attendant” in the future she imagined. Her mother currently provides the bulk or Tina’s PCA services. Mom is an energetic, attentive, kind, and funny woman, but that does not mean that Tina necessarily wants that much of Mom’s attention in her bedroom, in the bathroom, using transportation, at a job, or on a college campus.
There are many reasons it makes sense to keep PCA services in the family. Primary caregivers of people with extensive medical needs may find it challenging to find other employment flexible enough to accommodate frequent absences that my be necessary due to medial appointments or illness. No one dreams of being a PCA to make a fortune, but they may certainly treasure the commitment it allows them to make to providing care for a loved one. When the PCA is a family member who is able to take the care recipient to doctor appointments and therapy, communication between the medical team and home is that much more direct. When it comes to knowing a child’s needs and providing loving care, many times a parent or close family member is the most appropriate provider.
Parent/Teen relationships are challenging enough, but add a heightened Caregiver/Care Recipient dynamic to the equation, and things get more complicated. In learning transition skills, teens need to learn how to direct their cares to someone who may not be able to anticipate their needs. On top of that, they need to learn how to do so courteously. Some families can grow through their changing roles gracefully. However, it is easy (and common) to get stuck in a rut and have occasional difficulties keeping it cordial.
Tina and I spoke the day after the meeting, and it turns out I was correct about the vibe I was picking up from her. Does she want to explore working with other care providers in the future? Yes. Does Mom know that? Not yet. Is Tina ready to initiate the conversation? No. She is just getting the the halfway point of tenth grade, so we still have time. As educational and medical teams, we can support Tina by asking questions at natural times during discussions about the future about how she sees herself being supported in her activities of daily living. We can be asking Tina and Mom how satisfied they are in their Caregiver/Care Recipient roles. They may decide mutually that their professional relationship is putting a strain on their personal relationship. We can direct them to agencies to find additional care for Tina and other flexible employment for Mom.
I’m really proud of Tina, because her quest for independence has led her to seek out additional outpatient Occupational Therapy sessions to work on self cares, and she is requiring less assistance at home and at school. She is becoming a model of what the focus on transition is all about, so I have a feeling we will have that potentially awkward conversation – and get through it without too much trouble – soon.
Therapists – share how you help families go through this transition. Parents – did you go through a similar situation with your child during their teenage years?
