Category Archives: innovation

We Need a Champion We Can Trust

Some days I am amazed at all of the help we have gotten with A through the years.
Some days I am amazed at all of the help we have gotten with A through the years.

In the past two weeks, I have sat through a class on building trust with an organization and a round table discussion between the president of the American Board of Internal Medicine and a broad cross section of patient, consumer and purchaser organizations . At first, I did not link the two topics in my head until somebody at the round table described what patients want from their doctors as “someone who will champion me and my needs.”

When I heard this, I thought it summed up why I thought so highly of my favorite doctors. Of course, I want them to know all of the latest best practices, but as a patient I have little means to ascertain whether I am getting good or bad service in terms of medical quality. What I really need is somebody whom I can trust to do the multitude of little things to make me buy in to a plan of action to improve my health. Nothing builds trust faster with me than knowing the doctor will see my needs met, even when I know I am imposing a huge burden, sometimes bigger than I feel comfortable requesting.

When I think of doctors for whom I have the highest regard, I think of our children’s primary care doctor. Early in our fostering, my wife took our oldest to see her. Not only did she read through the medical history (2 big, full binders), she asked probing questions, followed up with requests for medications, gave needed referrals, and finally she filled out a huge application with a long letter detailing A’s medical history in an effort to get A into REM. REM is a program for rare and expensive case management. That A was ultimately denied did not matter. Her effort identified her as a champion, as somebody who had our kid’s interest in mind. As she has run for public office in recent years, it’s with a heavy heart we always vote for her. We vote for her because she is a champion, but we cringe at the thought of losing her energy and time as a doctor. She is one of the people I think of when I think of a quote from Andrew Bridge in Hope’s Boy,

“Some people are born for battles. Their bravery endures, regardless of frailty or strength. They are the ones we look to and our admiring hearts tell us, ‘They’ll know what to do.’ They are the great winners and losers of history. We remember them less for their outcomes than for their glorious acts. And, with the gentle wash of time, they become our heroes.”

When I think about my neurologists whom I have trusted, I think about why I trusted them. I trusted them because I felt my experience mattered to them. I felt as if they listened rather than heard what I said. They answered my questions and coaxed out what I valued in my treatments and life. I was and am willing to risk greater harm in order to preserve my abilities and life today. The best doctors have listened and have been responsive when I asked for help, and in turn I try not to ask often (a point of contention between me and my wife who thinks I need to ask more).

As I reflect back on the trust class and ABIM’s goal of requiring certified doctors to look at their own practices with a critical eye towards improving patient care, I come back to the comment from the round table. We patients want our doctors to champion our healthcare with us. In order for a patient to feel this bond, we have to feel trust.

I will readily admit much of healthcare today is set against the formation of this trust. Doctors have very limited time with each patient. The paperwork and administrative functions they and their staff are called to do by government, insurance and other organizations seems daunting. As a patient, all I can say is I am asking for a champion and a champion’s time/attention. I know I ask for a lot, always have. I just try not to ask often.

When thinking about how I would want the medical profession to change and how we as patients could measure a doctor’s trustworthiness which includes both intent and ability, I realized there are a few things I need to feel my doctor knows to do and how. I want them to know not only what treatments I may need, but how to chose amongst options and how to obtain needed treatments. The best have been ones who know how to make this easiest for me in terms of money and time, like the doctor who suggested I contact the pharmaceutical company for copay assistance. I want doctors to know how to be approachable. For some this comes easy, but I have certainly seen those for whom it is hard. I want a medical profession where criticism is seen as opportunity for improvement and thus constantly sought at all levels. The openness to being eternal students is critical. We can all improve

There is a kid’s riddle, “What do you call the person who graduated last in their class at Medical school?” The answer is, of course, “doctor.” In my ideal world, the follow-up question would be what do you call them and all the others who graduated ahead of them?” The answer should be just as obvious, “students.”

Share

Promises, Promises…

K looks out the front door despite being legally blind.  She has some sense of what lays in front of her.  It's a walk she does all the time.  Sometimes, we don't have to know or be able to see the details to know where we want to go.

As a society, what are we saying when we take a child from their parents? We are saying we can and will take better care of your child than the parents are taking. We only say this when we as a society feel the parents are taking dangerously bad care of the children.
We promise to take care of the children. Part of doing so has historically meant providing stable environments for the children to grow up and create loving bonds. There are many studies on the emotional impact on young children resulting from the loss of each parental bond, and yet the state feels the results of leaving a child in their current care will be worse than the damage caused by removing them from their current parent(s) for however long is needed for the situation to change in a positive way.

The problem is our ability as a state to care for these children is quietly eroding. Currently, I see two imminent threats to our current model that is already resulting in kids moving too often between families and group homes.

The first is our ability to foster children in a family setting rather than a group home. In MD where we foster, there was an average of 5,724 kids in placements outside of their biological family home in any given month. In the last year, there were also 199 new placements per month. Only an average of 4,044 foster children were in one of the 1,596 MD foster family homes.

It would seem we need more foster homes for these children, but the yearly trend is going the other way. Last year MD netted out a loss of 11 homes in which we can raise these children. The 11 may not seem like many, but it is an average over the past year. The number discounts the more distressing recent trends where MD lost 46 foster homes in the most recent three-month time-period between March and May. MD also had less foster children taken in by family in the past year too. (Stats for last two paragraphs can be found in the most recent set of Maryland Child Welfare Services Data: http://www.dhr.state.md.us/blog/?page_id=2856)

The second problem comes from how we chose to provide long-term families to children in the foster care system. Since we started foster care, the primary goal of foster care has been to reunite the children with their biological families. Removing the children has lasting impact on children’s ability to form emotional attachments. It would seem to follow then that removing the kid from both their biological families and their long-term foster families would cause further damage. So, I was not surprised by what I learned last week from Josh Kroll with the North American Council on Adoptable Children. It seems foster families are the families who historically adopt these children 57-59% of the time nationally. Foster parents are the group most likely to adopt these children and provide them with loving stable families.

Maryland (MD) used to try to remove the financial disincentive for foster parents to adopt. By disincentive, I mean MD tried to minimize the difference between what a family is paid to foster a child and the subsidy they will receive after adoption. After all, if the state is going to pay x dollars per year to raise the child, why not try to maximize what the child gets out of the deal by giving them a long-term family. After the adoption, the state can still save on many administrative costs like courts and social workers covering the care of the child, even if the adoption subsidy is close to the foster subsidy. Everyone seems to benefit under this rational.

As of July last year, this rational changed. Now according to the Department of Human Resources Social Services Administration,” Adoption assistance payments are not intended to cover every expense the family may incur to have that child as a member of the family, but rather to offset costs, such as therapy or therapeutic activities, incurred related to the child’s special needs that are reflected in their eligibility criteria for assistance.” With this change, there is a marked difference in what many families will receive in assistance if they adopt the children in their care. Logically, fewer parents will be able to adopt out of foster care, and those who do will be less able to take in/adopt additional children.  It’s worth noting from the stats above, over 5,700 kids in foster care and less than 1,600 homes means we are already depending on the foster homes to take in more than one kid.  Are the families intended to be able to provide everything for these kids when they adopt the majority of those lucky enough to be adopted?  Are we setting practical financial limits on the ability of the group most likely to adopt?

Josh Kroll provided some startling stories of what happens when adoption becomes expensive for the foster families. He told the story of his time working with Minnesota when foster care rates increased with cost of living increases, but adoption rates did not. Eventually, the adoption rate by foster families of kids in foster care fell to 20%, which is a stark contrast to the national historical 57-59% rate. Is MD heading in the same direction? I know J and I have been offered less than 45% of the support we receive as foster parents in an effort to force us to adopt K.

Are we living up to the promises we, as a society, make to children we remove from their biological families, and will we continue to be able to do so with our current policies?

Hands to Work, Hearts to God - A Shaker saying which fits my belief in foster care.
Hands to Work, Hearts to God – A Shaker saying which fits my belief in foster care.
Share