With increasing awareness about autism, it is inevitable that it is being portrayed in the media more and more.
The classic example of autism that pops into many people’s minds is Dustin Hoffman in “Rain Man.” Certainly this is ONE representation, but most people would say, “that’s not my kid.” How can we expect autism to be portrayed to our liking when we think of the mantra “if you’ve seen one kid with autism, you’ve seen one kid with autism”? Read full post »
We hope that you found our series on the emergency department, hospitalization and insurance helpful. One resounding note in each of the interviews we did was the critical role that families play in the care of their child, particularly in the emergency department or hospital. Today we turn our focus to ways in which families can share their experiences, both good and not so good, with various Seattle Children’s systems of care (including emergency department, inpatient hospitalization, and outpatient clinics) and get a response to questions and concerns. Providers need family feedback. We need to hear from you how to best care for your child within the constraints we face.
We realize that many of our readers are outside of the Seattle area, however every medical institution is required to provide an avenue for patients and families to provide feedback such as an Ombudsman or Patient Advocate. It is our hope that through this post you can find guidance in your area, whether it be at Seattle Children’s or another facility.
We interviewed Mark Mendelow, LICSW; Manager of Patient and Family Relations at Seattle Children’s. Mark has been a Social Worker in practice for over 30 years, and has been at Seattle Children’s for almost 11 years.
theautismblog: Will you describe what the Patient and Family Relations Program is?
Mendelow: Patient and Family Relations is a program of Patient & Family Support Services and was created to support our ongoing efforts to improve our service to patients and families. We serve as a liaison with patients, families, and hospital staff to help resolve complex or formal complaints and grievances.
theautismblog: How do patients and families provide feedback:
Mendelow: There are several options:
theautismblog: How many complaints do you receive in a year?
Mendelow: We documented about 1500 this past year
theautismblog: Why is it important for families to provide feedback?
Mendelow: Feedback from families has been instrumental to changing processes, and enhancing family centered care provided at Seattle Children’s. The Patient and Family Relations Program reports quarterly to the Hospital Steering Committee, and annually to the Quality and Safety Committee.
theautismblog: What should someone expect with regards to response if they do provide feedback?
Mendelow: Typically there is a response within the week from someone on the Patient and Family Relations team, and/or the manager of the particular department. Depending on the complexity of the situation, there may be a more detailed response or resolution within 30 days of the feedback.
theautismblog: How many staff are on the Patient & Family Relations team?
Mendelow: Three—Patty Prado (who is bilingual/Spanish speaking), Amanda Mogg, RN and myself.
theautismblog: We sometimes hear concerns from families that providing feedback might have a negative impact on their child’s care. Can you comment on this?
Mendelow: Providing feedback will not negatively affect a child’s care. We realize it can be difficult to express dissatisfaction with staff. We try very hard to make this process as easy and comfortable as possible. We appreciate hearing and need to know when things are not right, so we can continually improve our systems.
theautismblog: What about experiences that have gone well, or great? Do you want to hear about those as well?
Mendelow: Yes, we love to hear about the good, and ultimately recognize those who were involved in those experiences.
theautismblog: In your 11 years at Seattle Children’s, what do you think has been the biggest impact on services based on family feedback?
Mendelow: Feedback has helped shape how we provide service and we’ve increased our senior leadership’s attention to the voice of our families. I would highlight these three areas as pivotal to impact based on my experience.
Thanks, Mark, for sharing with us some avenues for patients and families to share their experiences regarding their care.
Part 4 in our series on Autism and Things We Would All Rather Not Think About is, drum roll please…. insurance. Health care coverage can be a complicated area that can (at times) feel like a barrier to accessing the care your child needs. As many of our families know, our children are complex and sometimes see many different providers. Here at the Seattle Children’s Autism Center we have nurse practioners, neurodevelopmental pediatricians, neurologists, speech and language pathologist, psychiatrists and psychologists all under one roof. What will be covered by insurance if your child has to see one of these providers? What about if you need to see two of them? Or several of them? Will the appointment be covered by your insurance? How much is this going to cost? Read full post »
Just a reminder that the next Autism 200 Series lecture will be Thursday, February 16, 2012 at Seattle Children’s Hospital in Wright Auditorium from 7-8:30 pm. These classes are designed for parents, teachers and caregivers. The topics associated with the majority of classes are applicable to all age ranges and for a wide variety of children diagnosed with autism.
Read full post »
We’ve all heard the adage: “if it ain’t broke, don’t fix it”. The questions we face surrounding autism in the DSM 5 are first, is it broken, and if so, how should it be fixed? In the current system, Autism, Asperger’s Disorder, and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) are treated like distinct conditions. Indeed, if a medication is FDA approved for the treatment of Autism, that approval does not extend to Asperger’s or PDD. It is not uncommon for service systems to treat these diagnoses as distinct conditions, and differentially recognize them (or not). Read full post »
Seattle Children’s provides healthcare for the special needs of children regardless of race, sex, creed, ethnicity or disability. Financial assistance for medically necessary services is based on family income and hospital resources and is provided to children under age 21 whose primary residence is in Washington, Alaska, Montana or Idaho.
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