Case Story

Advocacy for Children with Special Health Care Needs

As a health care provider in a clinic that cares for children with special health care needs, Chris often comes face-to-face with people who are struggling to barely make ends meet.  Many of the families Chris sees at the clinic don’t make very much money, have multiple jobs to keep the family afloat, live in rural or outlying areas of the county, and carry the burden of having extra expenses associated with special needs health care.  Sometimes, it feels like there is no hope (and no one who cares to listen)!  Two families' stories in particular have really impacted Chris over the last week.

Ellie Simmon

The Simmons live in a small community where Bob has worked as a chef at a chain restaurant for years.  He’d like to open his own restaurant—to realize a dream to own his own business. Thus far, Bob’s dream has been unattainable because he can’t afford the high health insurance costs of a small business owner. Holly is a homemaker who hasn’t taken a job because she and Bob felt it was important for her to stay home and care for their two daughters, Sara, who is 12-years-old, and Ellie, who is 8.

Ellie has asthma, but is otherwise healthy.  Because Holly is home all the time, she can make sure that Ellie is getting all of her treatments and medications as prescribed by the Pediatric Pulmonary Center team.  Of course, because Holly is not bringing in any income, the Simmons must make sacrifices.

Ellie's four scheduled clinic visits per year cost several hundred dollars each. Her family is constantly struggling to pay their twenty per cent share for these visits and the medication co-payments. Ellie does get respiratory infections from time to time and these are treated with inhaled corticosteroids that are fairly expensive.  Luckily, these medications keep her out of the hospital.

 

 

Laura Scott

Laura has grown up on the land that the Scott family has farmed for three generations.  Her dad, Bill, like any farmer, works from dawn to dusk and often more.  The family can’t earn enough income on farming alone, so Laura’s mom, Sandy, works in a factory during the day and waits tables in the evening.

Laura is 13. Despite her cystic fibrosis, she takes care of her 6-year-old brother Ryan when her parents are working--which is all the time.  She is also in charge of her own therapies: taking enzymes every time she eats, taking two nebulized medications, and using a Flutter™ device twice a day to remove mucus from her lungs. Laura also takes 4 or 5 other oral medications each day.

Laura admits that she doesn't always do all of her therapies or take all of her medications, but given her many responsibilities and her age this isn’t surprising.  Unfortunately, over the last year she has been hospitalized four or five times for two weeks each so that she can have antibiotics administered intravenously.  This is very expensive and hard on the Scotts, who can barely afford her regular treatments, much less extra hospital time.

 

Things to consider about this case

There are several issues to consider about these cases. You will explore these issues more fully in the learning activities.

• Changes and advances in technology have increased the availability as well as the cost of medical care.
• Why must we advocate for CSHCN as individuals and collectively as a group?
• What are different methods of advocacy? What do we need to keep in mind when advocating?

 

What to do next

Now that you have read these cases, go to the Lecture section to gain a better conceptual understanding of legislative advocacy. These cases will be used in the learning activities to demonstrate how you can advocate for families such as these